MEpedia - User contributions [en]

Merryn Crofts

2019-02-25T18:27:00Z

77.111.245.208:/* Ganglionitis */ x

[[File:Merryncrofts.jpg|right|200px]]
[[File:Times article 26 May 2018.jpg|thumb| 26 May 2018]]
'''Merryn Crofts''' was a young woman with [[Severe and very severe ME|very severe myalgic encephalomyelitis]] ([[Myalgic encephalomyelitis|ME]]) and also had suspected [[Ehlers-Danlos syndrome]]<ref name=":0">{{Cite news|url=https://www.meaction.net/2018/05/19/inquest-rules-merryn-crofts-died-due-to-severe-me/|title=Inquest Rules Merryn Crofts Died Due to Severe ME - #MEAction|last=Tillman|first=Adriane|date=2018-05-19|work=#MEAction|access-date=2018-10-27|archive-url=|archive-date=|dead-url=|language=en-US}}</ref><ref name=":1">{{Cite web|url=https://www.rochdaleonline.co.uk/news-features/2/news-headlines/118949/young-woman-from-norden-cause-of-death-attributed-to-myalgic-encephalomyelitis|title=Young woman from Norden cause of death attributed to Myalgic Encephalomyelitis|last=|first=|date=May 18, 2018|website=www.rochdaleonline.co.uk|archive-url=|archive-date=|dead-url=|access-date=2018-10-27}}</ref><ref>{{Cite web|url=https://mydonate.bt.com/fundraisers/amycrofts2|title=Ben Nevis Trek - Fundraising for 25% ME Group for The 25% ME Group on MyDonate|website=MyDonate|language=en-GB|access-date=2018-10-27}}</ref> and [[mast cell activation disorder]]<ref name=":0" /><ref name=":1" /> in the later years of her illness. She died on 23rd May 2017, 10 days after her 21st birthday. Her symptoms originally began in August 2011 [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|when she was 15]], and by the time of her death in May 2017, she had been completely bed-bound for the previous three years, had [[Photophobia|hypersensitivities to light]], [[Hyperacusis|noise]], [[Allodynia|touch]], smell and movement, had [[Gastrointestinal system|gastrointestinal]] hypersensitivities which meant she had to be TPN fed by a Broviac line, was in total pain, among many more symptoms.

An inquest into her death was held on Friday 18th May 2018 at Rochdale Coroner’s Court. The coroner, and multiple medical experts, overwhelmingly agreed that her death was due to starvation due to having to be removed from her Broviac line which was ultimately caused by [[myalgic encephalomyelitis]]. A psychiatrist present stated there was categorically no mental health issues with Merryn and that her illness was ME which is clearly very physical. Other medical professionals present also stated that ME should be her cause of death. The coroner stated that all her gastrointestinal issues were a result of a hypersensitive gut which was caused by ME, so ME is ultimately responsible for her death. Merryn is the second person, and the youngest, in the [[United Kingdom|UK]] after [[Sophia Mirza]] to have ME listed as cause of death. Her family hope the case will show how severe ME can be and that it can help sufferers of ME receive better understanding from the medical profession, and for more UK biomedical research to be conducted. <ref>[https://www.manchestereveningnews.co.uk/news/greater-manchester-news/bed-bound-unimaginable-pain-watching-14474293 Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture]</ref>

Her story was featured in the BBC Newsbeat documentary, [[M.E. and Me]]. Her family also have a Facebook page in her memory where they raise awareness for ME called Merryn's Legacy.

== Ganglionitis ==
[[File:Merry Crofts sick.JPG|250px|thumb|Merryn was bedbound and unable to eat. She weighed six stone (84 lbs) at her death; her autopsy revealed [[Dorsal root ganglia|ganglia]] [[inflammation]]. It is suspected that in the later years of her illness Merryn also suffered from [[Ehlers-Danlos syndrome|EDS]] and [[Mast cell activation disorder|MCAD]]. Her death certificate is the 2nd in the [[United Kingdom|UK]] to attribute a death to ME]]
* [https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425 Young woman bed-bound for three years before dying of disease that some insist is all in the mind]<ref>{{Cite news|url=https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425|title=Young woman died of disease that some insist is all in the mind|last=Siddle|first=John|date=2018-05-18|work=mirror|access-date=2018-08-16}}</ref>
<blockquote>Pathologist Daniel DuPlessis said that a post-mortem showed low-grade [[inflammation]] of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.</blockquote><blockquote>Dr DuPlessis pointed out that Merryn had inflammation of the [[Dorsal root ganglia|ganglia]] – gatekeepers to sensations in the [[brain]]. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found [[ganglionitis]].</blockquote>

==Media coverage==
*[https://www.manchestereveningnews.co.uk/news/greater-manchester-news/bed-bound-unimaginable-pain-watching-14474293 'Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture']
*[https://www.rochdaleonline.co.uk/news-features/2/news-headlines/117790/heartbroken-family-tell-of-how-daughter-slowly-died-after-battling 'Heartbroken family tell of how daughter slowly died after battling ME']
*[http://www.ladbible.com/community/feels-young-girl-dies-from-illness-some-experts-refuse-to-believe-exists-20180402 'Young Girl Dies From Illness Some Experts Refuse To Believe Exists']
*[https://www.mirror.co.uk/news/uk-news/young-woman-dies-after-illness-12288945 'Daughter died aged 21 after illness some experts don't believe is real left her bed-bound and wasting away']
*[https://www.thesun.co.uk/news/5951733/merryn-croft-me-death-inquest-rochdale-illness/ '"ABSOLUTE TORTURE" Heartbroken mum reveals how she watched her daughter waste away in "unimaginable pain" while suffering from ME']
*[https://www.thesun.co.uk/fabulous/6235179/chronic-fatigue-syndrome-me-and-me/ 'Devastating disease Family of girl killed by ME say doctors told her it was all in her head – before it robbed her of everything']
*[http://www.dailymail.co.uk/news/article-5569091/Woman-dies-aged-21-weighing-just-six-stone-wasting-away-ME.html 'Mother releases pictures of daughter who died aged 21 weighing just six stone after wasting away from neurological disease ME that some experts still do not think is real']
*[http://www.itv.com/news/granada/2018-05-11/mother-fights-for-more-awareness-of-m-e-after-her-daughter-died-age-just-21/ 'Mother fights for more awareness of M.E. after daughter's death aged just 21']
*[http://www.dailymail.co.uk/news/article-5748563/Drama-student-21-killed-rules-coroner-say-condition-mind.html#comments 'Drama student, 21, was killed by ME rules coroner even though some say condition is all in the mind']
*[https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425 'Mother fights for more awareness of M.E. after daughter's death aged just 21']
*[https://www.manchestereveningnews.co.uk/news/greater-manchester-news/young-woman-who-spent-years-14678759 'Young woman who spent years battling ME died as a result of the "devastating and cruel" illness, inquest hears']
*[http://www.rochdaleonline.co.uk/news-features/2/news-headlines/118949/young-woman-from-norden-cause-of-death-attributed-to-myalgic-encephalomyelitis 'Young woman from Norden cause of death attributed to Myalgic Encephalomyelitis']
*[https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w ME sufferer who was dismissed as hysterical vindicated in death]

==Learn more==
*[https://www.facebook.com/MerrynsMagicalFund/ Facebook: 'Merryn's Magical Fund']

== See also ==
*[[Dorsal root ganglia]]
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
*[[Severe and very severe ME]]

==References==
<references />

[[Category:People with ME, CFS, and/or FMS]]
[[Category:Deceased people with ME, CFS, and/or FMS]]

Merryn Crofts

2019-02-25T18:21:53Z

77.111.245.208:/* Ganglionitis */ image

[[File:Merryncrofts.jpg|right|200px]]
[[File:Times article 26 May 2018.jpg|thumb| 26 May 2018]]
'''Merryn Crofts''' was a young woman with [[Severe and very severe ME|very severe myalgic encephalomyelitis]] ([[Myalgic encephalomyelitis|ME]]) and also had suspected [[Ehlers-Danlos syndrome]]<ref name=":0">{{Cite news|url=https://www.meaction.net/2018/05/19/inquest-rules-merryn-crofts-died-due-to-severe-me/|title=Inquest Rules Merryn Crofts Died Due to Severe ME - #MEAction|last=Tillman|first=Adriane|date=2018-05-19|work=#MEAction|access-date=2018-10-27|archive-url=|archive-date=|dead-url=|language=en-US}}</ref><ref name=":1">{{Cite web|url=https://www.rochdaleonline.co.uk/news-features/2/news-headlines/118949/young-woman-from-norden-cause-of-death-attributed-to-myalgic-encephalomyelitis|title=Young woman from Norden cause of death attributed to Myalgic Encephalomyelitis|last=|first=|date=May 18, 2018|website=www.rochdaleonline.co.uk|archive-url=|archive-date=|dead-url=|access-date=2018-10-27}}</ref><ref>{{Cite web|url=https://mydonate.bt.com/fundraisers/amycrofts2|title=Ben Nevis Trek - Fundraising for 25% ME Group for The 25% ME Group on MyDonate|website=MyDonate|language=en-GB|access-date=2018-10-27}}</ref> and [[mast cell activation disorder]]<ref name=":0" /><ref name=":1" /> in the later years of her illness. She died on 23rd May 2017, 10 days after her 21st birthday. Her symptoms originally began in August 2011 [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|when she was 15]], and by the time of her death in May 2017, she had been completely bed-bound for the previous three years, had [[Photophobia|hypersensitivities to light]], [[Hyperacusis|noise]], [[Allodynia|touch]], smell and movement, had [[Gastrointestinal system|gastrointestinal]] hypersensitivities which meant she had to be TPN fed by a Broviac line, was in total pain, among many more symptoms.

An inquest into her death was held on Friday 18th May 2018 at Rochdale Coroner’s Court. The coroner, and multiple medical experts, overwhelmingly agreed that her death was due to starvation due to having to be removed from her Broviac line which was ultimately caused by [[myalgic encephalomyelitis]]. A psychiatrist present stated there was categorically no mental health issues with Merryn and that her illness was ME which is clearly very physical. Other medical professionals present also stated that ME should be her cause of death. The coroner stated that all her gastrointestinal issues were a result of a hypersensitive gut which was caused by ME, so ME is ultimately responsible for her death. Merryn is the second person, and the youngest, in the [[United Kingdom|UK]] after [[Sophia Mirza]] to have ME listed as cause of death. Her family hope the case will show how severe ME can be and that it can help sufferers of ME receive better understanding from the medical profession, and for more UK biomedical research to be conducted. <ref>[https://www.manchestereveningnews.co.uk/news/greater-manchester-news/bed-bound-unimaginable-pain-watching-14474293 Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture]</ref>

Her story was featured in the BBC Newsbeat documentary, [[M.E. and Me]]. Her family also have a Facebook page in her memory where they raise awareness for ME called Merryn's Legacy.

== Ganglionitis ==
[[File:Merry Crofts sick.JPG|250px|thumb|Merryn was bedbound and unable to eat. Merryn weighed six stone (84 lbs) at her death; her autopsy revealed [[Dorsal root ganglia|ganglia]] [[inflammation]]. It is suspected that in the later years of her illness Merryn also suffered from [[Ehlers-Danlos syndrome|EDS]] and [[Mast cell activation disorder|MCAD]]. Her death certificate is the 2nd in the [[United Kingdom|UK]] to attribute a death to ME]]
* [https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425 Young woman bed-bound for three years before dying of disease that some insist is all in the mind]<ref>{{Cite news|url=https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425|title=Young woman died of disease that some insist is all in the mind|last=Siddle|first=John|date=2018-05-18|work=mirror|access-date=2018-08-16}}</ref>
<blockquote>Pathologist Daniel DuPlessis said that a post-mortem showed low-grade [[inflammation]] of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.</blockquote><blockquote>Dr DuPlessis pointed out that Merryn had inflammation of the [[Dorsal root ganglia|ganglia]] – gatekeepers to sensations in the [[brain]]. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found [[ganglionitis]].</blockquote>

==Media coverage==
*[https://www.manchestereveningnews.co.uk/news/greater-manchester-news/bed-bound-unimaginable-pain-watching-14474293 'Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture']
*[https://www.rochdaleonline.co.uk/news-features/2/news-headlines/117790/heartbroken-family-tell-of-how-daughter-slowly-died-after-battling 'Heartbroken family tell of how daughter slowly died after battling ME']
*[http://www.ladbible.com/community/feels-young-girl-dies-from-illness-some-experts-refuse-to-believe-exists-20180402 'Young Girl Dies From Illness Some Experts Refuse To Believe Exists']
*[https://www.mirror.co.uk/news/uk-news/young-woman-dies-after-illness-12288945 'Daughter died aged 21 after illness some experts don't believe is real left her bed-bound and wasting away']
*[https://www.thesun.co.uk/news/5951733/merryn-croft-me-death-inquest-rochdale-illness/ '"ABSOLUTE TORTURE" Heartbroken mum reveals how she watched her daughter waste away in "unimaginable pain" while suffering from ME']
*[https://www.thesun.co.uk/fabulous/6235179/chronic-fatigue-syndrome-me-and-me/ 'Devastating disease Family of girl killed by ME say doctors told her it was all in her head – before it robbed her of everything']
*[http://www.dailymail.co.uk/news/article-5569091/Woman-dies-aged-21-weighing-just-six-stone-wasting-away-ME.html 'Mother releases pictures of daughter who died aged 21 weighing just six stone after wasting away from neurological disease ME that some experts still do not think is real']
*[http://www.itv.com/news/granada/2018-05-11/mother-fights-for-more-awareness-of-m-e-after-her-daughter-died-age-just-21/ 'Mother fights for more awareness of M.E. after daughter's death aged just 21']
*[http://www.dailymail.co.uk/news/article-5748563/Drama-student-21-killed-rules-coroner-say-condition-mind.html#comments 'Drama student, 21, was killed by ME rules coroner even though some say condition is all in the mind']
*[https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425 'Mother fights for more awareness of M.E. after daughter's death aged just 21']
*[https://www.manchestereveningnews.co.uk/news/greater-manchester-news/young-woman-who-spent-years-14678759 'Young woman who spent years battling ME died as a result of the "devastating and cruel" illness, inquest hears']
*[http://www.rochdaleonline.co.uk/news-features/2/news-headlines/118949/young-woman-from-norden-cause-of-death-attributed-to-myalgic-encephalomyelitis 'Young woman from Norden cause of death attributed to Myalgic Encephalomyelitis']
*[https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w ME sufferer who was dismissed as hysterical vindicated in death]

==Learn more==
*[https://www.facebook.com/MerrynsMagicalFund/ Facebook: 'Merryn's Magical Fund']

== See also ==
*[[Dorsal root ganglia]]
*[[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|Pediatric]]
*[[Severe and very severe ME]]

==References==
<references />

[[Category:People with ME, CFS, and/or FMS]]
[[Category:Deceased people with ME, CFS, and/or FMS]]

Anorexia and eating disorders

2019-02-25T18:21:02Z

77.111.245.208:image

'''Anorexia''' or '''anorexia nervosa''' is a [[:Category:Mental disorders |mental disorder]] involving distorted thoughts around food, eating or body weight combined with reducing food intake and/or other behaviors that lead to sufferer being significantly underweight.<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/anorexia|title=Anorexia Nervosa|date=2017-02-25|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/anorexia-nervosa/symptoms-causes/syc-20353591|title=Anorexia nervosa - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-02-25}}</ref> Other eating disorders include bulimia or bulimia nervosa,<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/bulimia|title=Bulimia Nervosa|date=2017-02-26|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/bulimia/symptoms-causes/syc-20353615|title=Bulimia nervosa - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-02-25}}</ref> which involves intentional [[vomiting]] or purging food to avoid [[weight gain]]; binge eating disorder,<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/bed|title=Binge Eating Disorder|date=2017-02-26|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.webmd.com/mental-health/eating-disorders/binge-eating-disorder/mental-health-binge-eating-disorder|title=Mental Health and Binge Eating Disorder|website=WebMD|language=en|access-date=2019-02-25}}</ref> and orthorexia<ref>{{Cite web|url=https://duckduckgo.com/?q=orthorexia&t=opera&ia=web|title=orthorexia at DuckDuckGo|website=duckduckgo.com|access-date=2019-02-25}}</ref><ref>{{Cite news|url=https://www.theguardian.com/society/2009/aug/16/orthorexia-mental-health-eating-disorder|title=Pure food obsession is latest eating disorder|last=Hill|first=Amelia|date=2009-08-15|work=The Observer|access-date=2019-02-25|language=en-GB|issn=0029-7712}}</ref><ref>{{Cite web|url=http://www.orthorexia.com/what-is-orthorexia/|title=What is Orthorexia? {{!}} Orthorexia|last=Bratman|first=Steven|authorlink=|last2=|first2=|authorlink2=|date=Jan 23, 2014|website=www.orthorexia.com|archive-url=|archive-date=|dead-url=|access-date=2019-02-25}}</ref> (eating an extremely restricted diet based on fear of eating "unhealthy" foods) and other specified feeding or eating disorder (OSFED).<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/osfed|title=Other Specified Feeding or Eating Disorder|date=2017-03-21|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref>

==Anorexia and ME/CFS ==

Digestive problems are very common symptoms in ME/CFS, and may some cause changes in eating behaviors or weight.

[[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause
* [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url =https://25megroup.org/download/2527/|title = KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING|last=The Grace Charity for M.E.|author-link1 =The Grace Charity for M.E.|last2 =The 25% ME Group |author-link2 =25 Percent ME Group|date =Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...|}}</ref>
:a symptom also found in some people after a stroke, and in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation |title =Drs. Byron Hyde and John Chia - Questions and Answers|page=10|work=The Quarterly Newsletter|date =Summer 2018|last=The 25% ME Group|author-link1=25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref>
* vomiting, which may be linked to [[vertigo]]
* [[food intolerance|food or medication intolerance]], which is found in approximately 50% of people with ME/CFS, may become severe
: this may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book
| last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain
| last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir
| last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested
| last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry
| last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi
| last10 = Powles | first10 = A C Peter | authorlink10 = A C Peter Powles
| last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey
| last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
| journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | page = 7-115
| date = 2003
| pmid =
| doi = 10.1300/J092v11n01_02
| url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf
}}</ref>
These swallowing and eating symptoms can lead to the sufferer becoming severely underweight; this can cause a misdiagnosis of anorexia<ref name=":0">{{Cite web|url=https://www.tymestrust.org/pdfs/metheillness.pdf|title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment.

Some people severely affected by [[ME/CFS]] need feeding tubes or artificial nutritional, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">ME sufferer who was dismissed as hysterical vindicated in death’ The Times 29 May 2018 by Lucy Bannerman; also The Quarterly published by the 25% ME Group Summer 2018 pages 22-23 www.25megroup.org</ref> This is also the case for some people with anorexia or eating disorders.

==Children and "refusal" to eat ==

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with [[chronic fatigue syndrome]] have had their diagnosis changed to [[Pervasive Refusal Syndrome]] because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.<ref>https://www.dailykos.com/stories/2018/10/10/1803351/-Karina-Hansen-is-FREE</ref><ref name=":0" />

{{Quote frame |text=Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).
When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks.
HELP! Please educate the Doctors and Nurses.|author =From a family outside Essex, [[UK]]|source=Our needs, our lives (2003)<ref name ="ourneedsourlives"/>}}

==Prevalence==

Unknown.

==Symptom recognition==
[[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer who has [[Severe_and_very_severe_ME#verysevere |very severe ME]], which causes him to remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[visual dysfunction]]. Whitney is fed via a TPN and needs full time care.]]
[[File:Merry Crofts sick.JPG|250px|thumb|[[Merryn Crofts]] was bedbound and unable to eat. Merryn weighed six stone (84 lbs) at her death; her autopsy revealed [[Dorsal root ganglia|ganglia]] [[inflammation]]. It is suspected that in the later years of her illness Merryn also suffered from [[Ehlers-Danlos syndrome|EDS]] and [[Mast cell activation disorder|MCAD]]. Her death certificate is the 2nd in the [[United Kingdom|UK]] to attribute a death to ME]]
Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /> A number of patient groups have raised concerns that anorexia may be a misdiagnosis in some patients with ME, particularly children or young people, and the [[Severe and very severe ME|severely ill]].<ref name=":0" />

[[Digestive problems|Digestive symptoms]] problems are well recognized, particularly [[irritable bowel syndrome]], and [[Food sensitivities|food intolerances]], and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:
* [[digestive problems]]
* [[nausea]]
* abdominal pain
* new [[Food sensitivities|food or medication sensitivities]]
* [[irritable bowel syndrome]]<ref name="canadianconsensus" />

==Notable studies==

There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents.

Byron and Hyde have started that enteroviruses may disrupt swallowing reflexes.<ref name="swallowing" />

==Possible causes==

==See also==
* [[Ethical issues]]
* [[Pervasive Refusal Syndrome]]
* [[dysphagia]] - swallowing difficulties

==Learn more==
* [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] - [[25 Percent ME Group |The 25% ME Group]]

*[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession] - [[Tymes Trust]]
*Wikipedia

==References==
<references>
<ref name="ourneedsourlives">{{Cite web |date =2003|url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|last=Tymes Trust|title = Our Needs Our Lives}}</ref>
</references>
[[Category:Signs and symptoms]]
[[Category:Mental disorders]]
[[Category:Diagnoses]]

Anorexia and eating disorders

2019-02-25T18:17:21Z

77.111.245.208:il

'''Anorexia''' or '''anorexia nervosa''' is a [[:Category:Mental disorders |mental disorder]] involving distorted thoughts around food, eating or body weight combined with reducing food intake and/or other behaviors that lead to sufferer being significantly underweight.<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/anorexia|title=Anorexia Nervosa|date=2017-02-25|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/anorexia-nervosa/symptoms-causes/syc-20353591|title=Anorexia nervosa - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-02-25}}</ref> Other eating disorders include bulimia or bulimia nervosa,<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/bulimia|title=Bulimia Nervosa|date=2017-02-26|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/bulimia/symptoms-causes/syc-20353615|title=Bulimia nervosa - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-02-25}}</ref> which involves intentional [[vomiting]] or purging food to avoid [[weight gain]]; binge eating disorder,<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/bed|title=Binge Eating Disorder|date=2017-02-26|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.webmd.com/mental-health/eating-disorders/binge-eating-disorder/mental-health-binge-eating-disorder|title=Mental Health and Binge Eating Disorder|website=WebMD|language=en|access-date=2019-02-25}}</ref> and orthorexia<ref>{{Cite web|url=https://duckduckgo.com/?q=orthorexia&t=opera&ia=web|title=orthorexia at DuckDuckGo|website=duckduckgo.com|access-date=2019-02-25}}</ref><ref>{{Cite news|url=https://www.theguardian.com/society/2009/aug/16/orthorexia-mental-health-eating-disorder|title=Pure food obsession is latest eating disorder|last=Hill|first=Amelia|date=2009-08-15|work=The Observer|access-date=2019-02-25|language=en-GB|issn=0029-7712}}</ref><ref>{{Cite web|url=http://www.orthorexia.com/what-is-orthorexia/|title=What is Orthorexia? {{!}} Orthorexia|last=Bratman|first=Steven|authorlink=|last2=|first2=|authorlink2=|date=Jan 23, 2014|website=www.orthorexia.com|archive-url=|archive-date=|dead-url=|access-date=2019-02-25}}</ref> (eating an extremely restricted diet based on fear of eating "unhealthy" foods) and other specified feeding or eating disorder (OSFED).<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/osfed|title=Other Specified Feeding or Eating Disorder|date=2017-03-21|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref>

==Anorexia and ME/CFS ==

Digestive problems are very common symptoms in ME/CFS, and may some cause changes in eating behaviors or weight.

[[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause
* [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url =https://25megroup.org/download/2527/|title = KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING|last=The Grace Charity for M.E.|author-link1 =The Grace Charity for M.E.|last2 =The 25% ME Group |author-link2 =25 Percent ME Group|date =Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...|}}</ref>
:a symptom also found in some people after a stroke, and in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation |title =Drs. Byron Hyde and John Chia - Questions and Answers|page=10|work=The Quarterly Newsletter|date =Summer 2018|last=The 25% ME Group|author-link1=25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref>
* vomiting, which may be linked to [[vertigo]]
* [[food intolerance|food or medication intolerance]], which is found in approximately 50% of people with ME/CFS, may become severe
: this may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book
| last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain
| last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir
| last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested
| last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry
| last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi
| last10 = Powles | first10 = A C Peter | authorlink10 = A C Peter Powles
| last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey
| last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
| journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | page = 7-115
| date = 2003
| pmid =
| doi = 10.1300/J092v11n01_02
| url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf
}}</ref>
These swallowing and eating symptoms can lead to the sufferer becoming severely underweight; this can cause a misdiagnosis of anorexia<ref name=":0">{{Cite web|url=https://www.tymestrust.org/pdfs/metheillness.pdf|title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment.

Some people severely affected by [[ME/CFS]] need feeding tubes or artificial nutritional, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">ME sufferer who was dismissed as hysterical vindicated in death’ The Times 29 May 2018 by Lucy Bannerman; also The Quarterly published by the 25% ME Group Summer 2018 pages 22-23 www.25megroup.org</ref> This is also the case for some people with anorexia or eating disorders.

==Children and "refusal" to eat ==

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with [[chronic fatigue syndrome]] have had their diagnosis changed to [[Pervasive Refusal Syndrome]] because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.<ref>https://www.dailykos.com/stories/2018/10/10/1803351/-Karina-Hansen-is-FREE</ref><ref name=":0" />

{{Quote frame |text=Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).
When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks.
HELP! Please educate the Doctors and Nurses.|author =From a family outside Essex, [[UK]]|source=Our needs, our lives (2003)<ref name ="ourneedsourlives"/>}}

==Prevalence==

Unknown.

==Symptom recognition==
[[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer who has [[Severe_and_very_severe_ME#verysevere |very severe ME]], which causes him to remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[visual dysfunction]]. Whitney is fed via a TPN and needs full time care.]]
Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /> A number of patient groups have raised concerns that anorexia may be a misdiagnosis in some patients with ME, particularly children or young people, and the [[Severe and very severe ME|severely ill]].<ref name=":0" />

[[Digestive problems|Digestive symptoms]] problems are well recognized, particularly [[irritable bowel syndrome]], and [[Food sensitivities|food intolerances]], and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:
* [[digestive problems]]
* [[nausea]]
* abdominal pain
* new [[Food sensitivities|food or medication sensitivities]]
* [[irritable bowel syndrome]]<ref name="canadianconsensus" />

==Notable studies==

There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents.

Byron and Hyde have started that enteroviruses may disrupt swallowing reflexes.<ref name="swallowing" />

==Possible causes==

==See also==
* [[Ethical issues]]
* [[Pervasive Refusal Syndrome]]
* [[dysphagia]] - swallowing difficulties

==Learn more==
* [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] - [[25 Percent ME Group |The 25% ME Group]]

*[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession] - [[Tymes Trust]]
*Wikipedia

==References==
<references>
<ref name="ourneedsourlives">{{Cite web |date =2003|url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|last=Tymes Trust|title = Our Needs Our Lives}}</ref>
</references>
[[Category:Signs and symptoms]]
[[Category:Mental disorders]]
[[Category:Diagnoses]]

Anorexia and eating disorders

2019-02-25T18:12:31Z

77.111.245.208:citations and bolding

'''Anorexia''' or '''anorexia nervosa''' is a [[:Category:Mental disorders |mental disorder]] involving distorted thoughts around food, eating or body weight combined with reducing food intake and/or other behaviors that lead to sufferer being significantly underweight.<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/anorexia|title=Anorexia Nervosa|date=2017-02-25|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/anorexia-nervosa/symptoms-causes/syc-20353591|title=Anorexia nervosa - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-02-25}}</ref> Other eating disorders include bulimia or bulimia nervosa,<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/bulimia|title=Bulimia Nervosa|date=2017-02-26|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.mayoclinic.org/diseases-conditions/bulimia/symptoms-causes/syc-20353615|title=Bulimia nervosa - Symptoms and causes|website=Mayo Clinic|language=en|access-date=2019-02-25}}</ref> which involves intentional vomiting or purging food to avoid weight gain; binge eating disorder,<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/bed|title=Binge Eating Disorder|date=2017-02-26|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref><ref>{{Cite web|url=https://www.webmd.com/mental-health/eating-disorders/binge-eating-disorder/mental-health-binge-eating-disorder|title=Mental Health and Binge Eating Disorder|website=WebMD|language=en|access-date=2019-02-25}}</ref> and orthorexia<ref>{{Cite web|url=https://duckduckgo.com/?q=orthorexia&t=opera&ia=web|title=orthorexia at DuckDuckGo|website=duckduckgo.com|access-date=2019-02-25}}</ref><ref>{{Cite news|url=https://www.theguardian.com/society/2009/aug/16/orthorexia-mental-health-eating-disorder|title=Pure food obsession is latest eating disorder|last=Hill|first=Amelia|date=2009-08-15|work=The Observer|access-date=2019-02-25|language=en-GB|issn=0029-7712}}</ref><ref>{{Cite web|url=http://www.orthorexia.com/what-is-orthorexia/|title=What is Orthorexia? {{!}} Orthorexia|last=Bratman|first=Steven|authorlink=|last2=|first2=|authorlink2=|date=Jan 23, 2014|website=www.orthorexia.com|archive-url=|archive-date=|dead-url=|access-date=2019-02-25}}</ref> (eating an extremely restricted diet based on fear of eating "unhealthy" foods) and other specified feeding or eating disorder (OSFED).<ref>{{Cite web|url=https://www.nationaleatingdisorders.org/learn/by-eating-disorder/osfed|title=Other Specified Feeding or Eating Disorder|date=2017-03-21|website=National Eating Disorders Association|language=en|access-date=2019-02-25}}</ref>

==Anorexia and ME/CFS ==

Digestive problems are very common symptoms in ME/CFS, and may some cause changes in eating behaviors or weight.

[[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause
* [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url =https://25megroup.org/download/2527/|title = KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING|last=The Grace Charity for M.E.|author-link1 =The Grace Charity for M.E.|last2 =The 25% ME Group |author-link2 =25 Percent ME Group|date =Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...|}}</ref>
:a symptom also found in some people after a stroke, and in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation |title =Drs. Byron Hyde and John Chia - Questions and Answers|page=10|work=The Quarterly Newsletter|date =Summer 2018|last=The 25% ME Group|author-link1=25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref>
* vomiting, which may be linked to [[vertigo]]
* [[food intolerance|food or medication intolerance]], which is found in approximately 50% of people with ME/CFS, may become severe
: this may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book
| last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain
| last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir
| last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested
| last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry
| last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi
| last10 = Powles | first10 = A C Peter | authorlink10 = A C Peter Powles
| last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey
| last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
| journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | page = 7-115
| date = 2003
| pmid =
| doi = 10.1300/J092v11n01_02
| url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf
}}</ref>
These swallowing and eating symptoms can lead to the sufferer becoming severely underweight; this can cause a misdiagnosis of anorexia<ref name=":0">{{Cite web|url=https://www.tymestrust.org/pdfs/metheillness.pdf|title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment.

Some people severely affected by [[ME/CFS]] need feeding tubes or artificial nutritional, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">ME sufferer who was dismissed as hysterical vindicated in death’ The Times 29 May 2018 by Lucy Bannerman; also The Quarterly published by the 25% ME Group Summer 2018 pages 22-23 www.25megroup.org</ref> This is also the case for some people with anorexia or eating disorders.

==Children and "refusal" to eat ==

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with [[chronic fatigue syndrome]] have had their diagnosis changed to [[Pervasive Refusal Syndrome]] because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.<ref>https://www.dailykos.com/stories/2018/10/10/1803351/-Karina-Hansen-is-FREE</ref><ref name=":0" />

{{Quote frame |text=Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).
When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks.
HELP! Please educate the Doctors and Nurses.|author =From a family outside Essex, [[UK]]|source=Our needs, our lives (2003)<ref name ="ourneedsourlives"/>}}

==Prevalence==

Unknown.

==Symptom recognition==
[[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer who has [[Severe_and_very_severe_ME#verysevere |very severe ME]], which causes him to remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[visual dysfunction]]. Whitney is fed via a TPN and needs full time care.]]
Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /> A number of patient groups have raised concerns that anorexia may be a misdiagnosis in some patients with ME, particularly children or young people, and the [[Severe and very severe ME|severely ill]].<ref name=":0" />

[[Digestive problems|Digestive symptoms]] problems are well recognized, particularly [[irritable bowel syndrome]], and [[Food sensitivities|food intolerances]], and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:
* [[digestive problems]]
* [[nausea]]
* abdominal pain
* new [[Food sensitivities|food or medication sensitivities]]
* [[irritable bowel syndrome]]<ref name="canadianconsensus" />

==Notable studies==

There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents.

Byron and Hyde have started that enteroviruses may disrupt swallowing reflexes.<ref name="swallowing" />

==Possible causes==

==See also==
* [[Ethical issues]]
* [[Pervasive Refusal Syndrome]]
* [[dysphagia]] - swallowing difficulties

==Learn more==
* [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] - [[25 Percent ME Group |The 25% ME Group]]

*[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession] - [[Tymes Trust]]
*Wikipedia

==References==
<references>
<ref name="ourneedsourlives">{{Cite web |date =2003|url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|last=Tymes Trust|title = Our Needs Our Lives}}</ref>
</references>
[[Category:Signs and symptoms]]
[[Category:Mental disorders]]
[[Category:Diagnoses]]

Anorexia and eating disorders

2019-02-25T18:04:36Z

77.111.245.208:citation

'''Anorexia''' or anorexia nervosa is a [[:Category:Mental disorders |mental disorder]] involving distorted thoughts around food, eating or body weight combined with reducing food intake and/or other behaviors that lead to sufferer being significantly underweight. Other eating disorders include bulimia or bulimia nervosa, which involves intentional vomiting or purging food to avoid weight gain; binge eating disorder, and orthorexia<ref>{{Cite news|url=https://www.theguardian.com/society/2009/aug/16/orthorexia-mental-health-eating-disorder|title=Pure food obsession is latest eating disorder|last=Hill|first=Amelia|date=2009-08-15|work=The Observer|access-date=2019-02-25|language=en-GB|issn=0029-7712}}</ref><ref>{{Cite web|url=http://www.orthorexia.com/what-is-orthorexia/|title=What is Orthorexia? {{!}} Orthorexia|last=Bratman|first=Steven|authorlink=|last2=|first2=|authorlink2=|date=Jan 23, 2014|website=www.orthorexia.com|archive-url=|archive-date=|dead-url=|access-date=2019-02-25}}</ref> (eating an extremely restricted diet based on fear of eating "unhealthy" foods) and other specified feeding or eating disorder (OSFED).{{citation needed}}

==Anorexia and ME/CFS ==

Digestive problems are very common symptoms in ME/CFS, and may some cause changes in eating behaviors or weight.

[[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause
* [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url =https://25megroup.org/download/2527/|title = KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING|last=The Grace Charity for M.E.|author-link1 =The Grace Charity for M.E.|last2 =The 25% ME Group |author-link2 =25 Percent ME Group|date =Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...|}}</ref>
:a symptom also found in some people after a stroke, and in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation |title =Drs. Byron Hyde and John Chia - Questions and Answers|page=10|work=The Quarterly Newsletter|date =Summer 2018|last=The 25% ME Group|author-link1=25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref>
* vomiting, which may be linked to [[vertigo]]
* [[food intolerance|food or medication intolerance]], which is found in approximately 50% of people with ME/CFS, may become severe
: this may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book
| last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain
| last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir
| last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested
| last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry
| last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi
| last10 = Powles | first10 = A C Peter | authorlink10 = A C Peter Powles
| last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey
| last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
| journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | page = 7-115
| date = 2003
| pmid =
| doi = 10.1300/J092v11n01_02
| url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf
}}</ref>
These swallowing and eating symptoms can lead to the sufferer becoming severely underweight; this can cause a misdiagnosis of anorexia<ref name=":0">{{Cite web|url=https://www.tymestrust.org/pdfs/metheillness.pdf|title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment.

Some people severely affected by [[ME/CFS]] need feeding tubes or artificial nutritional, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">ME sufferer who was dismissed as hysterical vindicated in death’ The Times 29 May 2018 by Lucy Bannerman; also The Quarterly published by the 25% ME Group Summer 2018 pages 22-23 www.25megroup.org</ref> This is also the case for some people with anorexia or eating disorders.

==Children and "refusal" to eat ==

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with [[chronic fatigue syndrome]] have had their diagnosis changed to [[Pervasive Refusal Syndrome]] because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.<ref>https://www.dailykos.com/stories/2018/10/10/1803351/-Karina-Hansen-is-FREE</ref><ref name=":0" />

{{Quote frame |text=Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).
When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks.
HELP! Please educate the Doctors and Nurses.|author =From a family outside Essex, [[UK]]|source=Our needs, our lives (2003)<ref name ="ourneedsourlives"/>}}

==Prevalence==

Unknown.

==Symptom recognition==
[[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer who has [[Severe_and_very_severe_ME#verysevere |very severe ME]], which causes him to remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[visual dysfunction]]. Whitney is fed via a TPN and needs full time care.]]
Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /> A number of patient groups have raised concerns that anorexia may be a misdiagnosis in some patients with ME, particularly children or young people, and the [[Severe and very severe ME|severely ill]].<ref name=":0" />

[[Digestive problems|Digestive symptoms]] problems are well recognized, particularly [[irritable bowel syndrome]], and [[Food sensitivities|food intolerances]], and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:
* [[digestive problems]]
* [[nausea]]
* abdominal pain
* new [[Food sensitivities|food or medication sensitivities]]
* [[irritable bowel syndrome]]<ref name="canadianconsensus" />

==Notable studies==

There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents.

Byron and Hyde have started that enteroviruses may disrupt swallowing reflexes.<ref name="swallowing" />

==Possible causes==

==See also==
* [[Ethical issues]]
* [[Pervasive Refusal Syndrome]]
* [[dysphagia]] - swallowing difficulties

==Learn more==
* [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] - [[25 Percent ME Group |The 25% ME Group]]

*[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession] - [[Tymes Trust]]
*Wikipedia

==References==
<references>
<ref name="ourneedsourlives">{{Cite web |date =2003|url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|last=Tymes Trust|title = Our Needs Our Lives}}</ref>
</references>
[[Category:Signs and symptoms]]
[[Category:Mental disorders]]
[[Category:Diagnoses]]

Anorexia and eating disorders

2019-02-25T17:58:38Z

77.111.245.208:x

'''Anorexia''' or anorexia nervosa is a [[:Category:Mental disorders |mental disorder]] involving distorted thoughts around food, eating or body weight combined with reducing food intake and/or other behaviors that lead to sufferer being significantly underweight. Other eating disorders include bulimia or bulimia nervosa, which involves intentional vomiting or purging food to avoid weight gain; binge eating disorder, and orthorexia (eating an extremely restricted diet based on fear of eating "unhealthy" foods) and other specified feeding or eating disorder (OSFED).{{citation needed}}

==Anorexia and ME/CFS ==

Digestive problems are very common symptoms in ME/CFS, and may some cause changes in eating behaviors or weight.

[[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause
* [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url =https://25megroup.org/download/2527/|title = KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING|last=The Grace Charity for M.E.|author-link1 =The Grace Charity for M.E.|last2 =The 25% ME Group |author-link2 =25 Percent ME Group|date =Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...|}}</ref>
:a symptom also found in some people after a stroke, and in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation |title =Drs. Byron Hyde and John Chia - Questions and Answers|page=10|work=The Quarterly Newsletter|date =Summer 2018|last=The 25% ME Group|author-link1=25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref>
* vomiting, which may be linked to [[vertigo]]
* [[food intolerance|food or medication intolerance]], which is found in approximately 50% of people with ME/CFS, may become severe
: this may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book
| last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain
| last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir
| last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested
| last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry
| last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi
| last10 = Powles | first10 = A C Peter | authorlink10 = A C Peter Powles
| last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey
| last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
| journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | page = 7-115
| date = 2003
| pmid =
| doi = 10.1300/J092v11n01_02
| url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf
}}</ref>
These swallowing and eating symptoms can lead to the sufferer becoming severely underweight; this can cause a misdiagnosis of anorexia<ref name=":0">{{Cite web|url=https://www.tymestrust.org/pdfs/metheillness.pdf|title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment.

Some people severely affected by [[ME/CFS]] need feeding tubes or artificial nutritional, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">ME sufferer who was dismissed as hysterical vindicated in death’ The Times 29 May 2018 by Lucy Bannerman; also The Quarterly published by the 25% ME Group Summer 2018 pages 22-23 www.25megroup.org</ref> This is also the case for some people with anorexia or eating disorders.

==Children and "refusal" to eat ==

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with [[chronic fatigue syndrome]] have had their diagnosis changed to [[Pervasive Refusal Syndrome]] because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.<ref>https://www.dailykos.com/stories/2018/10/10/1803351/-Karina-Hansen-is-FREE</ref><ref name=":0" />

{{Quote frame |text=Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).
When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks.
HELP! Please educate the Doctors and Nurses.|author =From a family outside Essex, [[UK]]|source=Our needs, our lives (2003)<ref name ="ourneedsourlives"/>}}

==Prevalence==

Unknown.

==Symptom recognition==
[[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer who has [[Severe_and_very_severe_ME#verysevere |very severe ME]], which causes him to remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[visual dysfunction]]. Whitney is fed via a TPN and needs full time care.]]
Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /> A number of patient groups have raised concerns that anorexia may be a misdiagnosis in some patients with ME, particularly children or young people, and the [[Severe and very severe ME|severely ill]].<ref name=":0" />

[[Digestive problems|Digestive symptoms]] problems are well recognized, particularly [[irritable bowel syndrome]], and [[Food sensitivities|food intolerances]], and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:
* [[digestive problems]]
* [[nausea]]
* abdominal pain
* new [[Food sensitivities|food or medication sensitivities]]
* [[irritable bowel syndrome]]<ref name="canadianconsensus" />

==Notable studies==

There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents.

Byron and Hyde have started that enteroviruses may disrupt swallowing reflexes.<ref name="swallowing" />

==Possible causes==

==See also==
* [[Ethical issues]]
* [[Pervasive Refusal Syndrome]]
* [[dysphagia]] - swallowing difficulties

==Learn more==
* [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] - [[25 Percent ME Group |The 25% ME Group]]

*[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession] - [[Tymes Trust]]
*Wikipedia

==References==
<references>
<ref name="ourneedsourlives">{{Cite web |date =2003|url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|last=Tymes Trust|title = Our Needs Our Lives}}</ref>
</references>
[[Category:Signs and symptoms]]
[[Category:Mental disorders]]
[[Category:Diagnoses]]

Talk:Anorexia and eating disorders

2019-02-25T17:58:05Z

77.111.245.208:EDNOS no longer recognized

https://en.wikipedia.org/wiki/Eating_disorder_not_otherwise_specified EDNOS no longer recognized and is now OSFED. https://en.wikipedia.org/wiki/Other_specified_feeding_or_eating_disorder--[[Special:Contributions/77.111.245.208|77.111.245.208]] 12:58, 25 February 2019 (EST)

Anorexia and eating disorders

2019-02-25T17:56:54Z

77.111.245.208:EDNOS is no longer recognized and now OSFED is.

'''Anorexia''' or anorexia nervosa is a [[:Category:Mental disorders |mental disorder]] involving distorted thoughts around food, eating or body weight combined with reducing food intake and/or other behaviors that lead to sufferer being significantly underweight. Other eating disorders include bulimia or bulimia nervosa, which involves intentional vomiting or purging food to avoid weight gain; binge eating disorder, and orthorexia (eating an extremely restricted diet based on fear of eating "unhealthy" foods) and other specified feeding or eating disorder (OSFED)).{{citation needed}}

==Anorexia and ME/CFS ==

Digestive problems are very common symptoms in ME/CFS, and may some cause changes in eating behaviors or weight.

[[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause
* [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url =https://25megroup.org/download/2527/|title = KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING|last=The Grace Charity for M.E.|author-link1 =The Grace Charity for M.E.|last2 =The 25% ME Group |author-link2 =25 Percent ME Group|date =Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...|}}</ref>
:a symptom also found in some people after a stroke, and in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation |title =Drs. Byron Hyde and John Chia - Questions and Answers|page=10|work=The Quarterly Newsletter|date =Summer 2018|last=The 25% ME Group|author-link1=25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref>
* vomiting, which may be linked to [[vertigo]]
* [[food intolerance|food or medication intolerance]], which is found in approximately 50% of people with ME/CFS, may become severe
: this may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book
| last1 = Carruthers | first1 = Bruce M. | authorlink1 = Bruce Carruthers
| last2 = Jain | first2 = Anil Kumar | authorlink2 = Anil Kumar Jain
| last3 = De Meirleir | first3 = Kenny L. | authorlink3 = Kenny De Meirleir
| last4 = Peterson | first4 = Daniel L. | authorlink4 = Daniel Peterson
| last5 = Klimas | first5 = Nancy G. | authorlink5 = Nancy Klimas
| last6 = Lerner | first6 = A. Martin | authorlink6 = Martin Lerner
| last7 = Bested | first7 = Alison C. | authorlink7 = Alison Bested
| last8 = Flor-Henry | first8 = Pierre | authorlink8 = Pierre Flor-Henry
| last9 = Joshi | first9 = Pradip | authorlink9 = Pradip Joshi
| last10 = Powles | first10 = A C Peter | authorlink10 = A C Peter Powles
| last11 = Sherkey | first11 = Jeffrey A. | authorlink11 = Jeffrey Sherkey
| last12 = van de Sande | first12 = Marjorie I. | authorlink12 = Marjorie van de Sande
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
| journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | page = 7-115
| date = 2003
| pmid =
| doi = 10.1300/J092v11n01_02
| url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf
}}</ref>
These swallowing and eating symptoms can lead to the sufferer becoming severely underweight; this can cause a misdiagnosis of anorexia<ref name=":0">{{Cite web|url=https://www.tymestrust.org/pdfs/metheillness.pdf|title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''|last=Colby|first=Jane|authorlink=Jane Colby|last2=|first2=|authorlink2=|date=|website=[[Tymes Trust]]|archive-url=|archive-date=|dead-url=|access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment.

Some people severely affected by [[ME/CFS]] need feeding tubes or artificial nutritional, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">ME sufferer who was dismissed as hysterical vindicated in death’ The Times 29 May 2018 by Lucy Bannerman; also The Quarterly published by the 25% ME Group Summer 2018 pages 22-23 www.25megroup.org</ref> This is also the case for some people with anorexia or eating disorders.

==Children and "refusal" to eat ==

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with [[chronic fatigue syndrome]] have had their diagnosis changed to [[Pervasive Refusal Syndrome]] because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.<ref>https://www.dailykos.com/stories/2018/10/10/1803351/-Karina-Hansen-is-FREE</ref><ref name=":0" />

{{Quote frame |text=Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).
When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks.
HELP! Please educate the Doctors and Nurses.|author =From a family outside Essex, [[UK]]|source=Our needs, our lives (2003)<ref name ="ourneedsourlives"/>}}

==Prevalence==

Unknown.

==Symptom recognition==
[[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer who has [[Severe_and_very_severe_ME#verysevere |very severe ME]], which causes him to remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[visual dysfunction]]. Whitney is fed via a TPN and needs full time care.]]
Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /> A number of patient groups have raised concerns that anorexia may be a misdiagnosis in some patients with ME, particularly children or young people, and the [[Severe and very severe ME|severely ill]].<ref name=":0" />

[[Digestive problems|Digestive symptoms]] problems are well recognized, particularly [[irritable bowel syndrome]], and [[Food sensitivities|food intolerances]], and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:
* [[digestive problems]]
* [[nausea]]
* abdominal pain
* new [[Food sensitivities|food or medication sensitivities]]
* [[irritable bowel syndrome]]<ref name="canadianconsensus" />

==Notable studies==

There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents.

Byron and Hyde have started that enteroviruses may disrupt swallowing reflexes.<ref name="swallowing" />

==Possible causes==

==See also==
* [[Ethical issues]]
* [[Pervasive Refusal Syndrome]]
* [[dysphagia]] - swallowing difficulties

==Learn more==
* [https://25megroup.org/download/2527/ KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING] - [[25 Percent ME Group |The 25% ME Group]]

*[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession] - [[Tymes Trust]]
*Wikipedia

==References==
<references>
<ref name="ourneedsourlives">{{Cite web |date =2003|url = http://www.tymestrust.org/pdfs/ourneedsourlives.pdf|last=Tymes Trust|title = Our Needs Our Lives}}</ref>
</references>
[[Category:Signs and symptoms]]
[[Category:Mental disorders]]
[[Category:Diagnoses]]

PACE trial documents

2019-02-25T15:21:29Z

77.111.245.208:/* Alem Matthees Selected data on PACE Trial participants */ *

This page gives an overview of the main '''PACE trial documents'''. These include the [[PACE trial]]'s full protocol, therapist manuals, participant newsletters and meeting minutes of the [[PACE Trial Steering Committee|trial steering committee]] and [[PACE Trial Management Group|trial management group]].

== Protocol ==
* [https://www.s4me.info/docs/PACEProtocolSearchable.pdf PACE trial protocol: Final version 5.0, 01.02.2006]

== Manuals ==

=== For therapists ===
* [https://me-pedia.org/images/6/65/Apt-therapist-manual.pdf Cox et al. 2004. Manual for Therapists Adaptive Pacing Therapy (APT) for CFS/ME.]

* [https://me-pedia.org/images/b/b4/PACE-cbt-therapist-manual.pdf Burgess & Chalder, 2004. Manual for Therapists Cognitive Behavioral Therapy (CBT) for CFS/ME.]

* [https://me-pedia.org/images/8/89/PACE-get-therapist-manual.pdf Bavinton et al. 2004. Manual for Therapists Graded Exercise Therapy (GET) for CFS/ME].

=== For participants ===
* [https://me-pedia.org/images/8/86/Apt-participant-manual.pdf Cox et al. 2004. Manual for Participants Adaptive Pacing Therapy (APT) for CFS/ME.]

* [https://me-pedia.org/images/7/7a/PACE-cbt-participant-manual.pdf Burgess & Chalder, 2004. Manual for Participants Cognitive Behavioral Therapy (CBT) for CFS/ME.]

* [https://me-pedia.org/images/d/d4/PACE-get-participant-manual.pdf Bavinton et al. 2004. Manual for Participants Graded Exercise Therapy (GET) for CFS/ME.]

=== For doctors ===
* [https://me-pedia.org/images/6/65/Ssmc-doctor-manual.pdf Murphy et al. 2004. Manual for doctors standardised specialist medical care (SSMC).]

== Newsletters ==
* [https://www.me-pedia.org/images/e/e8/Participants%27_newsletter_Issue_1_June_2006_PACE_trial.pdf Participants' newsletter Issue 1 June 2006]

* [https://www.me-pedia.org/images/6/66/Participants%27_newsletter_Issue_2_March_2007_PACE_trial.pdf Participants' newsletter Issue 2 March 2007]

* [https://www.me-pedia.org/images/a/a0/Participants%27_newsletter_Issue_3_December_2008_PACE_trial.pdf Participants' newsletter Issue 3 December 2008]

* [https://www.me-pedia.org/images/6/68/Participants%27_newsletter_Issue_4_February_2011_PACE_trial.pdf Participants' newsletter Issue 4 February 2011]

== Trial Steering Committee ==
:[https://www.me-pedia.org/images/f/f4/1._Trial_Steering_Committee_Meeting_22nd_Apr_2004.pdf 1. Trial Steering Committee Meeting 22nd Apr 2004]

:[https://www.me-pedia.org/images/e/e7/2._Trial_Steering_Committee_Meeting_27th_Sep_2004.pdf 2. Trial Steering Committee Meeting 27th Sep 2004]

:[https://www.me-pedia.org/images/0/04/3._Trial_Steering_Committee_Meeting_29th_Jun_2005.pdf 3. Trial Steering Committee Meeting 29th Jun 2005]

:[https://www.me-pedia.org/images/9/9b/4._Trial_Steering_Committee_Meeting_23rd_Jan_2006.pdf 4. Trial Steering Committee Meeting 23rd Jan 2006]

:[https://www.me-pedia.org/images/9/94/5._Trial_Steering_Committee_Meeting_17th_Jul_2006.pdf 5. Trial Steering Committee Meeting 17th Jul 2006]

:[https://www.me-pedia.org/images/0/0b/6._Trial_Steering_Committee_Meeting_27th_Jun_2007.pdf 6. Trial Steering Committee Meeting 27th Jun 2007]

:[https://www.me-pedia.org/images/8/88/7._Trial_Steering_Committee_Meeting_9th_Apr_2008.pdf 7. Trial Steering Committee Meeting 9th Apr 2008]

:[https://www.me-pedia.org/images/7/7f/8._Trial_Steering_Committee_Meeting_29th_Apr_2009.pdf 8. Trial Steering Committee Meeting 29th Apr 2009]

:[https://www.me-pedia.org/images/4/40/9._Trial_Steering_Committee_Meeting_10th_Sep_2010.pdf 9. Trial Steering Committee Meeting 10th Sep 2010.]

== Trial Management Group ==
MInutes from the trial managment group were obtained through a Freedom of Information request. For more information see the following thread on the forum Science for ME: [https://www.s4me.info/threads/pace-trial-tsc-and-tmg-minutes-released.3150/ "PACE trial TSC and TMG minutes released."]

[https://www.me-pedia.org/images/c/cd/20020607_Draft_minutes_of_PACE_team_meeting.pdf Draft minutes of PACE team meeting of 7.6.02]
* [https://www.me-pedia.org/images/7/7c/20030509_minute~1.pdf TMG meeting 1]

* [https://www.me-pedia.org/images/a/a3/20030905_TMG_-2.pdf TMG meeting 2]

* [https://www.me-pedia.org/images/2/23/20031113_TMG_-3.pdf TMG meeting 3]

* [https://www.me-pedia.org/images/3/31/20040123_TMG_-4.pdf TMG meeting 4]

* [https://www.me-pedia.org/images/e/ee/20040220_TMG_-5.pdf TMG meeting 5]

* [https://www.me-pedia.org/images/1/1b/20040322_TMG_-6.pdf TMG meeting 6]

* [https://www.me-pedia.org/images/6/67/20040507_TMG_-7.pdf TMG meeting 7]

* [https://www.me-pedia.org/images/0/0c/20040614_TMG_-8.pdf TMG meeting 8]

* [https://www.me-pedia.org/images/4/4f/20040708_TMG_-9.pdf TMG meeting 9]

* [https://www.me-pedia.org/images/9/9f/20040915_TMG_-10.pdf TMG meeting 10]

* [https://www.me-pedia.org/images/4/4a/20041104_TMG_-11.pdf TMG meeting 11]

* [https://www.me-pedia.org/images/9/9a/20041210_TMG_-12.pdf TMG meeting 12]

* [https://www.me-pedia.org/images/1/12/20050210_TMG_-13.pdf TMG meeting 13]

* [https://www.me-pedia.org/images/4/40/20050428_TMG_-14.pdf TMG meeting 14]

* [https://www.me-pedia.org/images/8/82/20050615_TMG_-15.pdf TMG meeting 15]

* [https://www.me-pedia.org/images/7/76/20050914_TMG_-16.pdf TMG meeting 16]

* [https://www.me-pedia.org/images/6/6c/20051117_TMG_-17.pdf TMG meeting 17]

* [https://www.me-pedia.org/images/5/59/20060208_TMG_-18.pdf TMG meeting 18]

* [https://www.me-pedia.org/images/a/ac/20060426_TMG_-19.pdf TMG meeting 19]

* [https://www.me-pedia.org/images/d/dc/20060712_TMG_-20.pdf TMG meeting 20]

* [https://www.me-pedia.org/images/d/d4/20061012_TMG_-21.pdf TMG meeting 21]

* [https://www.me-pedia.org/images/e/ef/20070208_TMG_-22.pdf TMG meeting 22]

* [https://www.me-pedia.org/images/9/95/20070509_TMG_-23.pdf TMG meeting 23]

* [https://www.me-pedia.org/images/6/6d/20070920_TMG_-24.pdf TMG meeting 24]

* [https://www.me-pedia.org/images/d/da/20071211_TMG_-25.pdf TMG meeting 25]

* [https://www.me-pedia.org/images/2/2d/20080213_TMG_-26.pdf TMG meeting 26]

* [https://www.me-pedia.org/images/4/42/20080508_TMG_-27.pdf TMG meeting 27]

* [https://www.me-pedia.org/images/c/c1/20080917_TMG_-28.pdf TMG meeting 28]

* [https://www.me-pedia.org/images/a/a3/20081204_TMG_-29.pdf TMG meeting 29]

* [https://www.me-pedia.org/images/4/41/20090311_TMG_-30.pdf TMG meeting 30]

* [https://www.me-pedia.org/images/f/fc/20090623_TMG_-31.pdf TMG meeting 31]

* [https://www.me-pedia.org/images/a/ac/20091104_TMG_-32.pdf TMG meeting 32]

* [https://www.me-pedia.org/images/8/8f/20100210_TMG_-33.pdf TMG meeting 33]

== Freedom of information requests for PACE trial data ==
This section gives an overview of several Freedom of Information (FOI) requests regarding the PACE-trial. This inventory however is not exhaustative and it is possible that several FOI requests are not yet listed below.

=== Neil Riley for the ME Association ===
* [https://web.archive.org/web/20190225102003/https://www.meassociation.org.uk/2011/05/6171/ PACE Trial – text of joint letter calling for more information. The ME Association, the Young ME Sufferers Trust and the West Midlands ME Groups Consortium . 24 May 2011.]

* [https://www.me-pedia.org/images/0/01/FOI_PACE_trial_data_by_the_ME_Association.pdf Response from Paull Smallcombe of Queen Mary University of London to Neil Riley of the ME Association. PACE trial data. 16 June 2011.]

=== Mr. Courtney recovery rates ===
* [https://web.archive.org/web/20190225115952/https://www.whatdotheyknow.com/request/request_for_raw_data_from_the_pa FOI request from Mr. Courtney to Medical Research Council. Request for raw data from the PACE Trial. 15 May 2011.]

* [https://www.whatdotheyknow.com/request/request_for_raw_data_from_the_pa_2#incoming-191831 FOI request from Mr. Courtney to Queen Mary Unversity of London. Request for raw data from the PACE Trial. 9 June 2011.]

* [https://web.archive.org/web/20190225121646/https://www.whatdotheyknow.com/request/request_for_deterioration_rates FOI Request from Mr. Courtney to Queen Mary University of London. Request for deterioration rates for PACE Trial. 29 March 2012]

* [https://web.archive.org/web/20190225102517/https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po FOI request from Mr. Courtney to Queen Mary University of London. PACE Trial: Recovery Rates and Positive Outcome Rates. 26 Ocotober 2012.]

* [https://web.archive.org/web/20190225102314/https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2 FOI request from Mr. Courtney to Queen Mary University of London. PACE Trial: Recovery Rates and Positive Outcome Rates (repeat request). 23 October 2013.]

=== Alem Matthees Selected data on PACE Trial participants ===
*https://web.archive.org/web/20190225101002/https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part FOI request from Alem Mattthees to Queen Mary University of London. Selected data on PACE Trial participants. 24 March 2014.]

=== Ann Sheridan data for the 6 minute walking test ===
* [https://web.archive.org/web/20190223230233/https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered FOI request from Anne Sheridan to Queen Mary University of London. 6min walking test data - Recovered patients in PACE trial. 3 September 2013.]

* [https://web.archive.org/web/20190223225858/https://www.whatdotheyknow.com/request/raw_data_for_6mwt FOI request from Anne Sheridan to Queen Mary University of London. Raw data for 6mwt. 30 May 2014.]

* [https://web.archive.org/web/20190223225335/https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment FOI request from Anna Sheridan to Queen Mary University of London. Raw 6mwt Data after treatment. 1 November 2015]

=== Graham McPhee data for the fitness test ===
* [https://web.archive.org/web/20190225100232/https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial FOI request from Graham McPhee to Queen Mary University of London. Fitness data for PACE trial. 29 June 2015.]

=== Robin Ellis destroyal of raw data ===
* [https://web.archive.org/web/20190225120249/https://www.whatdotheyknow.com/request/pace_trial_raw_data FOI request from Robin Ellis to Queen Mary University London. PACE trial raw data. 22 July 2016.]

=== Kathryn Dickenson objective data ===
* [https://web.archive.org/web/20190225114244/https://www.whatdotheyknow.com/request/cfs_pace_trial_objective_data_en FOI request from Kathryn Dickenson to Queen Mary University of London. CFS - PACE trial objective data enable comparison with patients own objective data. 6 May 2017.]

* [https://web.archive.org/web/20190225122256/https://www.whatdotheyknow.com/request/cfs_pace_where_is_the_objective FOI request from Kathryn Dickenson to Queen Mary University of London. CFS - PACE where is the objective data? 6 June 2017.]

=== Other FOI requests ===
* [https://web.archive.org/web/20190225115359/https://www.whatdotheyknow.com/request/funding_for_queen_mary_universit FOI request from John Slater to Department for Work and Pensions. Funding for Queen Mary University of London "PACE Trial" FOIA case. 3 October 2016.]

* [https://web.archive.org/web/20190225115546/https://www.whatdotheyknow.com/request/cfs_what_physicalphysiological_e FOI request from Katheryn Dickenson to Queen Mary University of London. CFS- What physical/physiological entry and outcome data did PACE authors undertake to collect, to "win" 5 million pounds. 5 July 2017.]

* [https://web.archive.org/web/20190225120538/https://www.whatdotheyknow.com/request/action_as_a_result_of_the_admiss_2 FOI request from Dave to King's College London. Action as a result of the admission the PACE analysis was misleading? 8 November 2016.]

* [https://web.archive.org/web/20190225120654/https://www.whatdotheyknow.com/request/when_were_the_mrc_informed_that FOI request from Peter Kemp to Medical Research Council. When were the MRC informed that the PACE Trial Primary Outcome Measures of 'Positive Outcome' and 'Recovery' were eliminated from the Research Protocol. 6 September 2016.]

* [https://web.archive.org/web/20190225120829/https://www.whatdotheyknow.com/request/fraudulent_action_by_qmul FOI request from Freda Fogget to Queen Mary University of London. Fraudulent action by QMUL.1 December 2016.]

* [https://web.archive.org/web/20190225120934/https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b FOI request from D. Benyon to Department for Work and Pensions. Part funding of the PACE trial by the DWP.]

* [https://web.archive.org/web/20190225121059/https://www.whatdotheyknow.com/request/the_pace_trial_white_et_al_2011 FOI request from Peter Kemp to Medical Research Council. The PACE Trial. White, et al. 2011. 14 October 2012.]

* [https://web.archive.org/web/20190225121822/https://www.whatdotheyknow.com/request/cfs_micheal_sharpe_action_after FOI request from George Jenson to University of Edingbrough. CFS - Micheal Sharpe - Action after his admission that the PACE trial's results were "cooked" and misleading. 18 November 2016.]

* [https://web.archive.org/web/20190225122120/https://www.whatdotheyknow.com/request/cfs_misleading_reports_on_effect FOI request from George Jenson to Oxford University Hospitals NHS Trust. 18 November 2016.]

* [https://web.archive.org/web/20190225122353/https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial FOI request from Alem Matthees to Queen Mary University of London. Timing of changes to PACE Trial recovery criteria. 26 April 2014.]

== Other documents ==
* [https://www.me-pedia.org/images/c/c7/Consent_forms_PACE_trial.pdf Full Trial Consent Form]

* [https://www.me-pedia.org/images/3/34/Invitation_to_join_the_PACE_trial.pdf invitation to join the PACE trial]

* [https://www.me-pedia.org/images/8/8f/Guidance_for_researchers_requesting_access_to_data_from_the_PACE_trial.pdf Guidance for researchers requesting access to data from the PACE trial]

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

PACE trial documents

2019-02-25T15:21:10Z

77.111.245.208:/* Other FOI requests */ bullets

This page gives an overview of the main '''PACE trial documents'''. These include the [[PACE trial]]'s full protocol, therapist manuals, participant newsletters and meeting minutes of the [[PACE Trial Steering Committee|trial steering committee]] and [[PACE Trial Management Group|trial management group]].

== Protocol ==
* [https://www.s4me.info/docs/PACEProtocolSearchable.pdf PACE trial protocol: Final version 5.0, 01.02.2006]

== Manuals ==

=== For therapists ===
* [https://me-pedia.org/images/6/65/Apt-therapist-manual.pdf Cox et al. 2004. Manual for Therapists Adaptive Pacing Therapy (APT) for CFS/ME.]

* [https://me-pedia.org/images/b/b4/PACE-cbt-therapist-manual.pdf Burgess & Chalder, 2004. Manual for Therapists Cognitive Behavioral Therapy (CBT) for CFS/ME.]

* [https://me-pedia.org/images/8/89/PACE-get-therapist-manual.pdf Bavinton et al. 2004. Manual for Therapists Graded Exercise Therapy (GET) for CFS/ME].

=== For participants ===
* [https://me-pedia.org/images/8/86/Apt-participant-manual.pdf Cox et al. 2004. Manual for Participants Adaptive Pacing Therapy (APT) for CFS/ME.]

* [https://me-pedia.org/images/7/7a/PACE-cbt-participant-manual.pdf Burgess & Chalder, 2004. Manual for Participants Cognitive Behavioral Therapy (CBT) for CFS/ME.]

* [https://me-pedia.org/images/d/d4/PACE-get-participant-manual.pdf Bavinton et al. 2004. Manual for Participants Graded Exercise Therapy (GET) for CFS/ME.]

=== For doctors ===
* [https://me-pedia.org/images/6/65/Ssmc-doctor-manual.pdf Murphy et al. 2004. Manual for doctors standardised specialist medical care (SSMC).]

== Newsletters ==
* [https://www.me-pedia.org/images/e/e8/Participants%27_newsletter_Issue_1_June_2006_PACE_trial.pdf Participants' newsletter Issue 1 June 2006]

* [https://www.me-pedia.org/images/6/66/Participants%27_newsletter_Issue_2_March_2007_PACE_trial.pdf Participants' newsletter Issue 2 March 2007]

* [https://www.me-pedia.org/images/a/a0/Participants%27_newsletter_Issue_3_December_2008_PACE_trial.pdf Participants' newsletter Issue 3 December 2008]

* [https://www.me-pedia.org/images/6/68/Participants%27_newsletter_Issue_4_February_2011_PACE_trial.pdf Participants' newsletter Issue 4 February 2011]

== Trial Steering Committee ==
:[https://www.me-pedia.org/images/f/f4/1._Trial_Steering_Committee_Meeting_22nd_Apr_2004.pdf 1. Trial Steering Committee Meeting 22nd Apr 2004]

:[https://www.me-pedia.org/images/e/e7/2._Trial_Steering_Committee_Meeting_27th_Sep_2004.pdf 2. Trial Steering Committee Meeting 27th Sep 2004]

:[https://www.me-pedia.org/images/0/04/3._Trial_Steering_Committee_Meeting_29th_Jun_2005.pdf 3. Trial Steering Committee Meeting 29th Jun 2005]

:[https://www.me-pedia.org/images/9/9b/4._Trial_Steering_Committee_Meeting_23rd_Jan_2006.pdf 4. Trial Steering Committee Meeting 23rd Jan 2006]

:[https://www.me-pedia.org/images/9/94/5._Trial_Steering_Committee_Meeting_17th_Jul_2006.pdf 5. Trial Steering Committee Meeting 17th Jul 2006]

:[https://www.me-pedia.org/images/0/0b/6._Trial_Steering_Committee_Meeting_27th_Jun_2007.pdf 6. Trial Steering Committee Meeting 27th Jun 2007]

:[https://www.me-pedia.org/images/8/88/7._Trial_Steering_Committee_Meeting_9th_Apr_2008.pdf 7. Trial Steering Committee Meeting 9th Apr 2008]

:[https://www.me-pedia.org/images/7/7f/8._Trial_Steering_Committee_Meeting_29th_Apr_2009.pdf 8. Trial Steering Committee Meeting 29th Apr 2009]

:[https://www.me-pedia.org/images/4/40/9._Trial_Steering_Committee_Meeting_10th_Sep_2010.pdf 9. Trial Steering Committee Meeting 10th Sep 2010.]

== Trial Management Group ==
MInutes from the trial managment group were obtained through a Freedom of Information request. For more information see the following thread on the forum Science for ME: [https://www.s4me.info/threads/pace-trial-tsc-and-tmg-minutes-released.3150/ "PACE trial TSC and TMG minutes released."]

[https://www.me-pedia.org/images/c/cd/20020607_Draft_minutes_of_PACE_team_meeting.pdf Draft minutes of PACE team meeting of 7.6.02]
* [https://www.me-pedia.org/images/7/7c/20030509_minute~1.pdf TMG meeting 1]

* [https://www.me-pedia.org/images/a/a3/20030905_TMG_-2.pdf TMG meeting 2]

* [https://www.me-pedia.org/images/2/23/20031113_TMG_-3.pdf TMG meeting 3]

* [https://www.me-pedia.org/images/3/31/20040123_TMG_-4.pdf TMG meeting 4]

* [https://www.me-pedia.org/images/e/ee/20040220_TMG_-5.pdf TMG meeting 5]

* [https://www.me-pedia.org/images/1/1b/20040322_TMG_-6.pdf TMG meeting 6]

* [https://www.me-pedia.org/images/6/67/20040507_TMG_-7.pdf TMG meeting 7]

* [https://www.me-pedia.org/images/0/0c/20040614_TMG_-8.pdf TMG meeting 8]

* [https://www.me-pedia.org/images/4/4f/20040708_TMG_-9.pdf TMG meeting 9]

* [https://www.me-pedia.org/images/9/9f/20040915_TMG_-10.pdf TMG meeting 10]

* [https://www.me-pedia.org/images/4/4a/20041104_TMG_-11.pdf TMG meeting 11]

* [https://www.me-pedia.org/images/9/9a/20041210_TMG_-12.pdf TMG meeting 12]

* [https://www.me-pedia.org/images/1/12/20050210_TMG_-13.pdf TMG meeting 13]

* [https://www.me-pedia.org/images/4/40/20050428_TMG_-14.pdf TMG meeting 14]

* [https://www.me-pedia.org/images/8/82/20050615_TMG_-15.pdf TMG meeting 15]

* [https://www.me-pedia.org/images/7/76/20050914_TMG_-16.pdf TMG meeting 16]

* [https://www.me-pedia.org/images/6/6c/20051117_TMG_-17.pdf TMG meeting 17]

* [https://www.me-pedia.org/images/5/59/20060208_TMG_-18.pdf TMG meeting 18]

* [https://www.me-pedia.org/images/a/ac/20060426_TMG_-19.pdf TMG meeting 19]

* [https://www.me-pedia.org/images/d/dc/20060712_TMG_-20.pdf TMG meeting 20]

* [https://www.me-pedia.org/images/d/d4/20061012_TMG_-21.pdf TMG meeting 21]

* [https://www.me-pedia.org/images/e/ef/20070208_TMG_-22.pdf TMG meeting 22]

* [https://www.me-pedia.org/images/9/95/20070509_TMG_-23.pdf TMG meeting 23]

* [https://www.me-pedia.org/images/6/6d/20070920_TMG_-24.pdf TMG meeting 24]

* [https://www.me-pedia.org/images/d/da/20071211_TMG_-25.pdf TMG meeting 25]

* [https://www.me-pedia.org/images/2/2d/20080213_TMG_-26.pdf TMG meeting 26]

* [https://www.me-pedia.org/images/4/42/20080508_TMG_-27.pdf TMG meeting 27]

* [https://www.me-pedia.org/images/c/c1/20080917_TMG_-28.pdf TMG meeting 28]

* [https://www.me-pedia.org/images/a/a3/20081204_TMG_-29.pdf TMG meeting 29]

* [https://www.me-pedia.org/images/4/41/20090311_TMG_-30.pdf TMG meeting 30]

* [https://www.me-pedia.org/images/f/fc/20090623_TMG_-31.pdf TMG meeting 31]

* [https://www.me-pedia.org/images/a/ac/20091104_TMG_-32.pdf TMG meeting 32]

* [https://www.me-pedia.org/images/8/8f/20100210_TMG_-33.pdf TMG meeting 33]

== Freedom of information requests for PACE trial data ==
This section gives an overview of several Freedom of Information (FOI) requests regarding the PACE-trial. This inventory however is not exhaustative and it is possible that several FOI requests are not yet listed below.

=== Neil Riley for the ME Association ===
* [https://web.archive.org/web/20190225102003/https://www.meassociation.org.uk/2011/05/6171/ PACE Trial – text of joint letter calling for more information. The ME Association, the Young ME Sufferers Trust and the West Midlands ME Groups Consortium . 24 May 2011.]

* [https://www.me-pedia.org/images/0/01/FOI_PACE_trial_data_by_the_ME_Association.pdf Response from Paull Smallcombe of Queen Mary University of London to Neil Riley of the ME Association. PACE trial data. 16 June 2011.]

=== Mr. Courtney recovery rates ===
* [https://web.archive.org/web/20190225115952/https://www.whatdotheyknow.com/request/request_for_raw_data_from_the_pa FOI request from Mr. Courtney to Medical Research Council. Request for raw data from the PACE Trial. 15 May 2011.]

* [https://www.whatdotheyknow.com/request/request_for_raw_data_from_the_pa_2#incoming-191831 FOI request from Mr. Courtney to Queen Mary Unversity of London. Request for raw data from the PACE Trial. 9 June 2011.]

* [https://web.archive.org/web/20190225121646/https://www.whatdotheyknow.com/request/request_for_deterioration_rates FOI Request from Mr. Courtney to Queen Mary University of London. Request for deterioration rates for PACE Trial. 29 March 2012]

* [https://web.archive.org/web/20190225102517/https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po FOI request from Mr. Courtney to Queen Mary University of London. PACE Trial: Recovery Rates and Positive Outcome Rates. 26 Ocotober 2012.]

* [https://web.archive.org/web/20190225102314/https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2 FOI request from Mr. Courtney to Queen Mary University of London. PACE Trial: Recovery Rates and Positive Outcome Rates (repeat request). 23 October 2013.]

=== Alem Matthees Selected data on PACE Trial participants ===
[https://web.archive.org/web/20190225101002/https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part FOI request from Alem Mattthees to Queen Mary University of London. Selected data on PACE Trial participants. 24 March 2014.]

=== Ann Sheridan data for the 6 minute walking test ===
* [https://web.archive.org/web/20190223230233/https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered FOI request from Anne Sheridan to Queen Mary University of London. 6min walking test data - Recovered patients in PACE trial. 3 September 2013.]

* [https://web.archive.org/web/20190223225858/https://www.whatdotheyknow.com/request/raw_data_for_6mwt FOI request from Anne Sheridan to Queen Mary University of London. Raw data for 6mwt. 30 May 2014.]

* [https://web.archive.org/web/20190223225335/https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment FOI request from Anna Sheridan to Queen Mary University of London. Raw 6mwt Data after treatment. 1 November 2015]

=== Graham McPhee data for the fitness test ===
* [https://web.archive.org/web/20190225100232/https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial FOI request from Graham McPhee to Queen Mary University of London. Fitness data for PACE trial. 29 June 2015.]

=== Robin Ellis destroyal of raw data ===
* [https://web.archive.org/web/20190225120249/https://www.whatdotheyknow.com/request/pace_trial_raw_data FOI request from Robin Ellis to Queen Mary University London. PACE trial raw data. 22 July 2016.]

=== Kathryn Dickenson objective data ===
* [https://web.archive.org/web/20190225114244/https://www.whatdotheyknow.com/request/cfs_pace_trial_objective_data_en FOI request from Kathryn Dickenson to Queen Mary University of London. CFS - PACE trial objective data enable comparison with patients own objective data. 6 May 2017.]

* [https://web.archive.org/web/20190225122256/https://www.whatdotheyknow.com/request/cfs_pace_where_is_the_objective FOI request from Kathryn Dickenson to Queen Mary University of London. CFS - PACE where is the objective data? 6 June 2017.]

=== Other FOI requests ===
* [https://web.archive.org/web/20190225115359/https://www.whatdotheyknow.com/request/funding_for_queen_mary_universit FOI request from John Slater to Department for Work and Pensions. Funding for Queen Mary University of London "PACE Trial" FOIA case. 3 October 2016.]

* [https://web.archive.org/web/20190225115546/https://www.whatdotheyknow.com/request/cfs_what_physicalphysiological_e FOI request from Katheryn Dickenson to Queen Mary University of London. CFS- What physical/physiological entry and outcome data did PACE authors undertake to collect, to "win" 5 million pounds. 5 July 2017.]

* [https://web.archive.org/web/20190225120538/https://www.whatdotheyknow.com/request/action_as_a_result_of_the_admiss_2 FOI request from Dave to King's College London. Action as a result of the admission the PACE analysis was misleading? 8 November 2016.]

* [https://web.archive.org/web/20190225120654/https://www.whatdotheyknow.com/request/when_were_the_mrc_informed_that FOI request from Peter Kemp to Medical Research Council. When were the MRC informed that the PACE Trial Primary Outcome Measures of 'Positive Outcome' and 'Recovery' were eliminated from the Research Protocol. 6 September 2016.]

* [https://web.archive.org/web/20190225120829/https://www.whatdotheyknow.com/request/fraudulent_action_by_qmul FOI request from Freda Fogget to Queen Mary University of London. Fraudulent action by QMUL.1 December 2016.]

* [https://web.archive.org/web/20190225120934/https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b FOI request from D. Benyon to Department for Work and Pensions. Part funding of the PACE trial by the DWP.]

* [https://web.archive.org/web/20190225121059/https://www.whatdotheyknow.com/request/the_pace_trial_white_et_al_2011 FOI request from Peter Kemp to Medical Research Council. The PACE Trial. White, et al. 2011. 14 October 2012.]

* [https://web.archive.org/web/20190225121822/https://www.whatdotheyknow.com/request/cfs_micheal_sharpe_action_after FOI request from George Jenson to University of Edingbrough. CFS - Micheal Sharpe - Action after his admission that the PACE trial's results were "cooked" and misleading. 18 November 2016.]

* [https://web.archive.org/web/20190225122120/https://www.whatdotheyknow.com/request/cfs_misleading_reports_on_effect FOI request from George Jenson to Oxford University Hospitals NHS Trust. 18 November 2016.]

* [https://web.archive.org/web/20190225122353/https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial FOI request from Alem Matthees to Queen Mary University of London. Timing of changes to PACE Trial recovery criteria. 26 April 2014.]

== Other documents ==
* [https://www.me-pedia.org/images/c/c7/Consent_forms_PACE_trial.pdf Full Trial Consent Form]

* [https://www.me-pedia.org/images/3/34/Invitation_to_join_the_PACE_trial.pdf invitation to join the PACE trial]

* [https://www.me-pedia.org/images/8/8f/Guidance_for_researchers_requesting_access_to_data_from_the_PACE_trial.pdf Guidance for researchers requesting access to data from the PACE trial]

[[Category: Notable studies]]
[[Category:Psychological paradigm]]
[[Category:History]]

Talk:Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

2019-02-25T15:11:56Z

77.111.245.208:/* Not child friendly */ :

==People with pediatric ME/CFS ==

All the examples are very severely ill people who died or didn't recover, which is not typical. Examples of some who are less severely affected, and perhaps a graph on severity would make this page far less depressing (and more accurate) [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:I can't find examples of people that onset as children that only have SEID, but if you can then reference them. Everyone we have examples of on MEpedia are very sick.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Not child friendly ==

MEpedia's main audience won't be children but it would be nice to have a bit more visual appeal on this page, as well as breaking up any large chunks of text for easy reading.

Is it worth having a page on ME/CFS aimed at young people? I've noticed that the Tymes Trust has done useful leaflets, perhaps a one page primer? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:Start the Primer based on Tymes Trust information.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Adding videos and images ==

I think this would help readability and appeal to younger people reading. It may be worth setting up a YouTube Playlist on MEAction's YouTube channel about this. Some millions missing photos involving children or their shoes too. Is consent needed for children's photos if they are not identified by name? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:I have looked for images and can't locate any of children. There is one child on the PEM page that you might want to post.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Avoid referencing MEpedia itself==

Please link to the relevant page instead of using a reference (eg for those with ME), or visit the page and find copy the reference used instead. MEpedia should try and avoid referencing itself, especially because it then becomes difficult to find where the original info came from if it's factual. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:I guess you should go to the page and get the reference and post it.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Rimes study ==
Not cited in page, is it [https://www.ncbi.nlm.nih.gov/pubmed/17332180/ Rimes 2007?] Issues with prevalence by Rimes described in Jason et al (2015)
*2015, Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample<ref name ="Jason2015">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336218/</ref > [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336218/ (Full text)]

"One problem with population based efforts (e.g., Rimes et al., 2007) is that the small number of identified patients with CFS resulted in very wide confidence intervals around the prevalence estimates. For example, in the Rimes et al. (2007) study of British general practitioners, the point prevalence of pediatric CFS was 0.5%, but the 95% confidence interval around this ranged from 0.01 to 0.9, which would result in estimates of anywhere between 10 and 900 per 100,000. Thus, the true prevalence rate is unclear. Also, physician samples tend to be biased, generally under- estimating the true prevalence rate."
[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 06:46, 25 February 2019 (EST)

:Post it.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==References ==

<ref name="Shi, 2018">{{Cite journal
| last1 = Shi | first1 = J. | authorlink1 =
| last2 = Shen | first2 = J. | authorlink2 =
| last3 = Xie | first3 = J. | authorlink3 =
| last4 = Zhi | first4 = J. | authorlink4 =
| last5 = Xu | first5 = Y. | authorlink5 =
| title = Chronic fatigue syndrome in Chinese middle-school students
| journal = Medicine | volume = 97 | issue = 4 | page = e9716
| date = 2018
| pmid =
| doi = 10.1097/MD.0000000000009716
}}
</ref>

<ref name="Rowe, et al, 2017">{{Cite journal
| last1 = Rowe | first1 = Peter C. | authorlink1 = Peter Rowe
| last2 = Underhill | first2 = Rosemary A. | authorlink2 = Rosemary Underhill
| last3 = Friedman | first3 = Kenneth J. | authorlink3 = Kenneth Friedman
| last4 = Gurwitt | first4 = Alan | authorlink4 = Alan Gurwitt
| last5 = Medow | first5 = Marvin S. | authorlink5 = Marvin Medow
| last6 = Schwartz | first6 = Malcolm S. | authorlink6 = Malcolm Schwartz
| last7 = Speight | first7 = Nigel | authorlink7 = Nigel Speight
| last8 = Stewart | first8 = Julian M. | authorlink8 = Julian Stewart
| last9 = Vallings | first9 = Rosamund | authorlink9 = Rosamund Vallings
| last10 = Rowe | first10 = Katherine S. | authorlink10 = Katherine Rowe
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
| journal = Frontiers in Pediatrics | volume = 5 | issue = 121 | page =
| date = 2017
| pmid =
| doi = 10.3389/fped.2017.00121
}}
</ref>
<ref name="Bakken, 2016">{{Cite journal
| last1 = Bakken | first1 = IJ | authorlink1 =
| last2 = Tveito | first2 = K | authorlink2 =
| last3 = Aaberg | first3 = KM | authorlink3 =
| last4 = Ghaderi | first4 = S | authorlink4 =
| last5 = Gunnes | first5 = N | authorlink5 =
| last6 = Trogstad | first6 = L | authorlink6 =
| last7 = Magnus | first7 = P | authorlink7 =
| last8 = Stoltenberg | first8 = C | authorlink8 =
| last9 = Haberg | first9 = SE | authorlink9 =
| title = Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway
| journal = BMC Family Practice | volume = 17 | issue = 1 | page = 128
| date = 2016
| pmid = 27590471
| doi = 10.1186/s12875-016-0527-7
}}
</ref>

References not needed as citations were created through the wizard

Talk:Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

2019-02-25T15:11:19Z

77.111.245.208:about the recent Discussion page

==People with pediatric ME/CFS ==

All the examples are very severely ill people who died or didn't recover, which is not typical. Examples of some who are less severely affected, and perhaps a graph on severity would make this page far less depressing (and more accurate) [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:I can't find examples of people that onset as children that only have SEID, but if you can then reference them. Everyone we have examples of on MEpedia are very sick.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Not child friendly ==

MEpedia's main audience won't be children but it would be nice to have a bit more visual appeal on this page, as well as breaking up any large chunks of text for easy reading.

Is it worth having a page on ME/CFS aimed at young people? I've noticed that the Tymes Trust has done useful leaflets, perhaps a one page primer? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

Start the Primer based on Tymes Trust information.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Adding videos and images ==

I think this would help readability and appeal to younger people reading. It may be worth setting up a YouTube Playlist on MEAction's YouTube channel about this. Some millions missing photos involving children or their shoes too. Is consent needed for children's photos if they are not identified by name? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:I have looked for images and can't locate any of children. There is one child on the PEM page that you might want to post.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Avoid referencing MEpedia itself==

Please link to the relevant page instead of using a reference (eg for those with ME), or visit the page and find copy the reference used instead. MEpedia should try and avoid referencing itself, especially because it then becomes difficult to find where the original info came from if it's factual. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 14:43, 17 February 2019 (EST)

:I guess you should go to the page and get the reference and post it.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==Rimes study ==
Not cited in page, is it [https://www.ncbi.nlm.nih.gov/pubmed/17332180/ Rimes 2007?] Issues with prevalence by Rimes described in Jason et al (2015)
*2015, Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample<ref name ="Jason2015">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336218/</ref > [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336218/ (Full text)]

"One problem with population based efforts (e.g., Rimes et al., 2007) is that the small number of identified patients with CFS resulted in very wide confidence intervals around the prevalence estimates. For example, in the Rimes et al. (2007) study of British general practitioners, the point prevalence of pediatric CFS was 0.5%, but the 95% confidence interval around this ranged from 0.01 to 0.9, which would result in estimates of anywhere between 10 and 900 per 100,000. Thus, the true prevalence rate is unclear. Also, physician samples tend to be biased, generally under- estimating the true prevalence rate."
[[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 06:46, 25 February 2019 (EST)

:Post it.--[[Special:Contributions/77.111.245.208|77.111.245.208]] 10:11, 25 February 2019 (EST)

==References ==

<ref name="Shi, 2018">{{Cite journal
| last1 = Shi | first1 = J. | authorlink1 =
| last2 = Shen | first2 = J. | authorlink2 =
| last3 = Xie | first3 = J. | authorlink3 =
| last4 = Zhi | first4 = J. | authorlink4 =
| last5 = Xu | first5 = Y. | authorlink5 =
| title = Chronic fatigue syndrome in Chinese middle-school students
| journal = Medicine | volume = 97 | issue = 4 | page = e9716
| date = 2018
| pmid =
| doi = 10.1097/MD.0000000000009716
}}
</ref>

<ref name="Rowe, et al, 2017">{{Cite journal
| last1 = Rowe | first1 = Peter C. | authorlink1 = Peter Rowe
| last2 = Underhill | first2 = Rosemary A. | authorlink2 = Rosemary Underhill
| last3 = Friedman | first3 = Kenneth J. | authorlink3 = Kenneth Friedman
| last4 = Gurwitt | first4 = Alan | authorlink4 = Alan Gurwitt
| last5 = Medow | first5 = Marvin S. | authorlink5 = Marvin Medow
| last6 = Schwartz | first6 = Malcolm S. | authorlink6 = Malcolm Schwartz
| last7 = Speight | first7 = Nigel | authorlink7 = Nigel Speight
| last8 = Stewart | first8 = Julian M. | authorlink8 = Julian Stewart
| last9 = Vallings | first9 = Rosamund | authorlink9 = Rosamund Vallings
| last10 = Rowe | first10 = Katherine S. | authorlink10 = Katherine Rowe
| title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
| journal = Frontiers in Pediatrics | volume = 5 | issue = 121 | page =
| date = 2017
| pmid =
| doi = 10.3389/fped.2017.00121
}}
</ref>
<ref name="Bakken, 2016">{{Cite journal
| last1 = Bakken | first1 = IJ | authorlink1 =
| last2 = Tveito | first2 = K | authorlink2 =
| last3 = Aaberg | first3 = KM | authorlink3 =
| last4 = Ghaderi | first4 = S | authorlink4 =
| last5 = Gunnes | first5 = N | authorlink5 =
| last6 = Trogstad | first6 = L | authorlink6 =
| last7 = Magnus | first7 = P | authorlink7 =
| last8 = Stoltenberg | first8 = C | authorlink8 =
| last9 = Haberg | first9 = SE | authorlink9 =
| title = Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway
| journal = BMC Family Practice | volume = 17 | issue = 1 | page = 128
| date = 2016
| pmid = 27590471
| doi = 10.1186/s12875-016-0527-7
}}
</ref>

References not needed as citations were created through the wizard