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===CFS as illness without disease=== I think it's worth having a '''"CFS as a non-disease"''' heading since that is one of the key points that causes an issue - "illness without disease" being the MUS model and also fitting the CBM too. '''"Response to criticisms"''' or '''"Main criticisms"''' might be worth of a heading under controversies. It would be the place to (very briefly) reference the many sources of quotes. Wessely is so frequently quoted as claiming that patients have mental health stigma and that is the issue, but actually that's his way of distracting from greater issues. I think we are moving in the right direction. [[User:Pyrrhus]] thanks for the encouragement. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:40, July 19, 2019 (EDT) Yes, I posted the comment above. I agree with the changes you introduced, such as deleting that sentence about neurologists' derision and changing some of the headlines (just deleted 'atypical' before depression in the headline). I don't know if 'CFS as a non-disease' is a good one though. It' might be confused as being his view which I think wouldn't be entirely correct. He thinks CFS patients are really ill, it's just that he mostly has a psychiatric etiology in mind. He has defended the construct of CFS against people like Showalter. He might think it's not a disease but that's mostly because he thinks CFS is heterogeneous, much like hypertension. There's already a section on his view on ME - where he thinks this label and its campaigners are doing more harm than good so to say. What content are you thinking of for a 'main criticism' section except for the quotes? I see that the 'Learn more' section consists mostly of criticism of Wessely. So perhaps we can change the title and turn that into an overview of criticisms of Wessely where the link to his quotes can be included? - Sisyphus. I already gave it a go. If you don't like it you can delete it and reinstate the previous version. It's just a suggestion. - Sisyphus. :'''Disease''' has a specific, scientific meaning but illness has a different meaning. He's basically claimed there is no underlying disease process - and I think it was him he used the term "illness without disease". The scientific meaning for the word '''"Syndrome"''' as in Fibromyalgia Syndrome or CFS means a collection of symptoms often found together. It does not suggest an underlying disease process. The ICD classification is of a neurological '''disease''' - there if a separate "Signs and Symptoms" category for anything that may not have an underlying disease process. This is significant because according to the rationale of the [[cognitive behavioral model]], and the justification for CBT and GET, there is no possible underlying diaease in the model - which means of that model were correct, those treatments would be cures. They are both rehabilitation treatments - yet if there's an untreated underlying disease, as we know there is through Immunology evidence, autopsies etc, you can't expect a rehabilitation treatment to be much use - it's like rehab for a broken leg without setting the leg first. Imagine doing rehab for heart disease, without treating the heart disease. Wessely nominated CFS as a "non-disease" for a poll in the highly influential British Medical Journal. I will find some references on this, but the significant might escape some. It's best understood through looking at the diagrams explaining CBM vs biomedical models. BTW: Showalter who you mentioned above is Elaine Showalter, not a scientist but an opinionated writer / English literature academic. Wessely will defend CFS because it's his funding source (and I think he accepts it as an illness), but then alternates between saying CFS and ME are the same and claiming ME doesn't exist. A frequent pattern for Wessely is to claim no disease but that the people are sick and he knows how to treat them - Gulf War Illness, Fibromyalgia, ME/CFS - the many physical abnormalities don't matter, the degree of disability is minimized and people's reality is questioned. They are accused of being "motivated" to remain ill and that neglecting their medical needs and denying access to disability payments will "help" cure them. This is the '''psychosocial''' approach - he claims his approach is biopsychosocial but actually he suggests no medical tests, never recommends medication and blames everything biological on psychological or social causes (social = benefits, help from others). [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 19:07, July 25, 2019 (EDT) Sorry for my late response. I think we should be careful not overstating things. Disease usually refers to demonstrable pathology and most experts agree that the pathology of ME/CFS is currently not or poorly understood. The WHO is much more careful in its statements about ME/CFS than you suggest. Regarding the new ICD-11 it made the following comment: ''"Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time. Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter."'' See: https://www.s4me.info/threads/updates-on-status-of-icd-11-and-changes-to-other-classification-and-terminology-systems.3912/page-9#post-123205 ::Thanks for your comments. I'm entirely in agreement with the ICD statement above. Medically "disease" does not mean contagious / infectious or suggest any cause at all. It means there is an underlying disease process. I will check the medical definition to be clear. I believe the WHO classification may be linked to earlier research incision post mortem findings involving brain and spinal cord abnormalities, which are uncontested. *The WHO classification is under [https://icd.who.int/browse10/2016/en#/VI VI Diseases of the nervous system], then '''Other disorders of brain''' (reflecting that much is not yet known so can't be grouped in with others yet) *after some investigation I found that illness not known to be linked to a specific disease / medically unexplained symptoms are classed in the Symptoms category [https://icd.who.int/browse10/2016/en#/XVIII "Signs and symptoms] - which also has a "nervous system" subcategory - Fibromyalgia is in Signs and Symptoms at present. If you can explain what you understand by "disease" rather than illness that would be great. I think to include this needs explanation - absolutely don't want anyone to misinterpret the meaning. [https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314 ICD-11] classification is the same. This is significant because on many occasions Wessely has attempted to claim it can be classified elsewhere, as non-neurological and not a disease. See: * [https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-8-35 this model] for no disease process - all impairment is shown as the result of things under patient control, with all biological symptoms except the initial fatigue resulting from boom and bust behaviors, meaning without no underlying disease and according to this theory totally reversible by psychotherapy and behavior changes. The [https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-8-35 biological model] instead - not supported by Wessely - shows IO&NS pathways and a disease process only partly influenced by patient behaviors like exercise or stress. The [[metabolic trap]] hypothesis is also about an underlying disease process. [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:21, August 7, 2019 (EDT) ====Do you have a link that Wessely nominated CFS as a non-disease==== I thought he simply commented on that BMJ poll. See: * https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122847/ There's a number of different sources for this, besides the poll, but every time he claims it's Neurasthenia that is what he is saying eg Old wine, new bottles. Will find some sources below. Calling CFS a "functional somatic syndrome" and the same syndrome as fibro and IBS is part of this since he does not recognize that the disease process exists in any of these [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 13:21, August 7, 2019 (EDT) *Chronic Fatigue Syndrome, ENCYCLOPEDIA OF LIFE SCIENCES & 2001 Nature Publishing Group<ref name ="NotDiseaseCleareWessely2001">https://onlinelibrary.wiley.com/doi/abs/10.1038/npg.els.0002207</ref >{{Rp|10}} [https://www.academia.edu/14140691/Chronic_fatigue_syndrome Full text] - see summary (9 Aug - my original doi was wrong and link now not working so both now replaced, [https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=known+to+the+Victorians+as+neurasthenia+wasclearly+its+forerunner%2C+not+just+in+terms+of+symptoms%2C+butpresumed+aetiologies%2C+treatments+and+much+else&btnG= alternative link]) ''In clinical practice it is clearly an illness, associated with loss of function and ill health, but clinical science has failed to come up with convincing evidence for any specific pathological process – it is not a disease, or at least not yet.'' *What do you think is a non-disease?: Pros and cons of medicalisation [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122847/ Full text] *[https://api.parliament.uk/historic-hansard/lords/2002/apr/16/chronic-fatigue-syndromeme UK Parliament discussion on Wessely's article and BMJ poll] ::[[User:Sisyphus]] your understanding of "disease" is the same as mine, which is good. I think most clinicians won't recognize the specific abnormalities underlying ME & CFS, however on MEpedia we write from the '''scientific consensus''' of experts on the topic - Wessely is an expert but against scientific consensus in some areas, see [[MEpedia:Science guidelines]] and the suggested sources there. So we would go by things like the Institute of Medicine report, CCC, ICC, and both the CDC / US health system plus and (reluctantly) the UK now accept evidence of disease status despite the lack of specific biological test, eg the CPET testing poineered by Workwell showing abnormalities in physical capability on cardiovascular activities on consecutive days (this is evidence accepted by the US disability system, and the CDC), the UK has repeatedly confirmed that the government recognizes "CFS/ME" and PVFS as a neurological disease and the doctor's computer system only allows it to be coded as that (Google Snowmed CFS for info), although the NHS documentation avoids the topic of classification entirely. I am less sure if the situation in other countries, but apparently any country following the International Classification of Diseases cannot class it as non-disease since they are obliged to follow the ICD for all illnesses. Immune differences have also been found and a number of biomarkers proposed if not in clinical use yet (hand grip strength, OMF nanoneedle etc). Other evidence comes from brain and spinal abnormalities in autopsies - do not a practical test for patients in a clinic (!) So while acceptance of it as a disease isn't there at clinical level, overall scientific consensus of experts accepts this. Scientific consensus of course changes over time, so if reporting on views / findings that are quite old and don't reflect present scientific consensus this can be mentioned. Eg CBT was the consensus 10 years ago, but it's status now is less clear (since the PACE trial data release etc) - CDC do no endorse it, UK is reviewing whether to keep it and just had a [https://www.meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019/ 2000 patient study] done to help with this decision. Regardless of scientific consensus I would like to cover Wessely's view on this. I've added detailed quotes from sources showing this, and of course his view of CFS as a functional somatic syndrome is well known already (FSS means no underlying disease process). He's on record as stating it's not a neurological disease in his view due to lack of "compelling" evidence - but I haven't been able to [[MEpedia:Verifiability|verify]] the original quote so it's not in my list [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 15:40, August 9, 2019 (EDT) {{collapse top}} "Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self- reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME." and "Perhaps the essential ambiguity of CFS and the other contested diagnoses, with the contrast between normal appearance and far from normal feeling, and the lack of objective or medically accepted disease verification, continues to leave the sufferer stranded uncomfortably be- tween illness and disease." (quotes added 9 Aug) {{collapse bottom}} * (Brazilian study) - Chronic fatigue syndrome: An overview <ref name="Cho2005">https://www.scielo.br/scielo.php?pid=S1516-44462005000300003&script=sci_arttext&tlng=es</ref >[https://www.scielo.br/scielo.php?pid=S1516-44462005000300003&script=sci_arttext&tlng=es Full text] - claims no biological abnormalities exist in CFS - despite huge amounts of evidence including the IOM report (not published at the time) - "Similarly, functional somatic syndromes refer to groups of symptoms lacking disease-specific, demonstrable abnormalities of structure, and are usually defined by specialty or organ system.1 They include irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, chronic pelvic pain, temporomandibular joint dysfunction and more recently Gulf War syndrome." * he was part of the working group of the influential [[Report of the joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners]] report, p5 states: "The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors” (Joint Royal Colleges Report on CFS, October 1996)<ref name="JointCollegesReport">{{Cite web|url=https://shop.rcplondon.ac.uk/products/chronic-fatigue-syndrome|title=Chronic fatigue syndrome | last =Royal College of Physicans | first = |authorlink=Royal College of Physicians | last2 = Royal College of Psychiatrists | first2= | authorlink2 = Royal College of Psychiatrists| date = 1996 | website = |publisher=RCP|language=en|publication-place=London|archive-url=|archive-date=|url-status=|access-date=2019-03-22 | last3 = Royal College of General Practitioners | authorlink3 = Royal College of General Practitioners}}</ref> [https://me-pedia.org/images/7/71/1996_UK_Chronic_Fatigue_Syndrome_report.pdf Full text ] *Chronic fatigue: symptom and syndrome [https://www.researchgate.net/profile/Simon_Wessely/publication/11991809_Chronic_Fatigue_Symptom_and_Syndrome/links/0046352c1498a03c7e000000/Chronic-Fatigue-Symptom-and-Syndrome.pdf Full text] - claims it is just a label for whatever is unexplained rather than a specific illness - "WHY DO WE NEED CRITERIA FOR THE CHRONIC FATIGUE SYNDROME? {{collapse top}} The need for criteria for the chronic fatigue syndrome comes from two sources. The first is the research community. Without criteria, meaningful comparisons between studies become impossible, and the introduction of such criteria has been a prerequisite for the cur- rent research effort. But we must not forget that our operational criteria for something we call “the chronic fatigue syndrome” is just that—operational criteria to allow research to be done. The existence of the criteria does not mean that there is a disorder that corresponds to the criteria. The criteria operationalize, but they do not reify. The pressure to reify the chronic fatigue syndrome also comes from the way in which the developed world organizes medical services and reimbursement systems. There have always been sound financial reasons for each medical specialty to develop its own unexplained syndrome, one that its practitioners alone are qualified to diagnose, manage, and bill for (34)." {{Collapse bottom}} *CFS patients are described as having "no identifiable organic disease" in Chalder, Simon Wessely Trudie. "24. Chronic fatigue." Handbook of Neurological Rehabilitation (2002): 327. <ref name="ChalderWessely2002">https://books.google.com/books?hl=en&lr=&id=E4F5AgAAQBAJ&oi=fnd&pg=PA327</ref > (link added Aug 9) ====Re: CFS as illness without disease -- ~~~~==== :: Replace this text with your reply
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