Talk:Primer for journalists

Things to cover

• Intro - ME/CFS not always lifelong, references needed here - seems like most who recover do within 18 months to 2 years - it's usually described as not lifelong (meaning acquired), plus multi-systemic and incurable

Eek... it should say that symptoms are never lifelong meaning nobody is born with it (perhaps say it is an acquired neurological disease (refs ICC primer p1), with a recovery rate of only 1 in 20). Refs for not lifelong but acquired are include ICC primer p1, CCC p11-12, Fukuda1994 p956, IOM2015 p6. Recovery rate refs will be on Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome (I usually copy the source code version of refs myself to save time). Usually low recovery rates add that clinically significant improvement rates are higher. ~Njt (talk) 22:24, June 12, 2024 (UTC)

• Unfortunately a psychiatric approach - needs explanation since it can be interpreted as anti-psychiatry, should it also say instead of a biomedical approach - people need to understand that the consequences are severe and that this approach is behavioral and about challenging thoughts - some of those thoughts having significant scientific evidence that they are facts... the MUPS approach of denying medical care and investigation of further symptoms is not found in general psychiatry - neither is the argument that removing sickness benefits improves health Recent UK survey of over 2000 patients, see MEAction blog for custom graphs, No decisions about ME - NE Association report, 2015

perhaps put:

Historically, despite the lack of psychological symptoms in the diagnostic criteria of ME/CFS, most treatment providers took a primarily psychiatric approach, despite there being only weak evidence for abiopsychosocial model of ME/CFS, and disregarded evidence of the underlying biomedical disease process. From around 2007, clinicians have pivoted to a biomedical treatment approach for ME/CFS, with any psychiatric distress treated as secondary consequence of chronic illness rather than a cause of the disease.(Refs as per CDC changes plus new NICE diagnostic criteria).

• Stereotypes assumptions often found in the media that aren't addressed here are the assumption that all patients / patient groups believe it's caused by a virus, and an anti-psychiatry theme which is presented as anti-science, rather than the pro-science and vast support for scientists from patients and their families (including of course Ron Davis) and Invest in ME Research science research center in Norfolk / Norfolk

There is some good content on other pages that can be linked to here. I think it may be tough to summarise and reference. ~Njt (talk) 22:24, June 12, 2024 (UTC)

• What about a graph or two on patient harm from GET & CBT

Good idea. There's some already in the Files and on other pages. Although it may be better to focus on what's really happening with biomedical research findings since CBT/GET are old news. Biomarker studies, mitochondria, and the Klaus Wirth/Carmen Scheibenborgen research on auto-antibodies (neurovascular hypotheses) and blood abnormalities might be better, or embed a video eg from OMF.

• Neurological disease not mentioned - also disease has a specific meaning involving an underlying disease prices, illness does not imply an underlying disease process)World Health Organization ref
• ME Awareness Day and Severe ME Awareness Day could get a mention here

Perhaps Awareness Days as a heading then list them?

• The many pro-science patient groups, patient funded research plus Science4ME and Phoenix Rising could get a mention

Journalists may want to contact patient groups but I am not sure about forum mentions... perhaps list 3 from the US, 2 or 3 from the UK and any other large groups?

• Biomarkers could do with a nanoneedle mention - we have a page on this study

Yes, and the metabolic trap theory too ~Njt (talk) 22:24, June 12, 2024 (UTC)

• Pages that could be linked to
  • Cognitive behavioral model
  • Stigma and discrimination
  • Ethical issues
  • Causes of death
  • Severe and very severe ME
  • PACE trial and Intimidation and harassment of PACE trial critics
• ME activists and advocates

ME/CFS Experts

Can these be added back in, these are key for journalists looking for someone to interview. I am not comfortable having bloggers listed, but patient advocates who do media work would be a good idea, in addition to patient groups. ~Njt (talk) 22:24, June 12, 2024 (UTC)

• Euthanasia and ME/CFS

I wondered about adding this because it may come up in the news around specific patients. I will check on Slack to see what User:JaimeS thinks but we haven't really got much covered on it. Bearing in mind that people who are suicidal may be reading, I think having some words from ME/CFS specialists and researchers is worthwhile about factors leading to suicide, possibly also mention of Whitney Dafoe's view on this, given his severity. ~Njt (talk) 22:24, June 12, 2024 (UTC)

• Some sections here been used in the other Category:Primers so we need to work out which to update, doing a section at once would be more manageable. ~Njt (talk) 22:24, June 12, 2024 (UTC)

Possible references

notjusttired (talk) 12:43, August 2, 2019 (EDT)

Old discussions

Great start! Are you thinking different pages for science and general journalists?

Possibly useful:

http://www.meaction.net/wp-content/uploads/2015/08/ME-Action-One-Pager-1.pdf

Also think historic funding, outbreaks, etc. important to mention.

Some things might be cited, other things just interlinked

--JenB (talk) 04:15, 27 February 2016 (PST)

Adding this link here for future consideration http://thekafkapandemic.blogspot.se/2013/03/three-damaging-myths-about-severity.html?m=1 I will rename the page to be a primer for journalists. If we see a need to split content by general and science writers we can do that later Olliec (talk) 01:50, 28 February 2016 (PST)

I think this video is very informative and can be used on any Primer page. Dr. Nancy Klimas on the ME/CFS name, sleep disorders and more. One of her best videos in my opinion. http://me-pedia.org/wiki/Primer_for_journalists

Also, if there is a co-morbid section perhaps putting the Fibromyalgia page would be helpful.

I can't wait to start using the Primers! --DxCFS (talk) 09:09, 2 March 2016 (PST)

Sorry, meant to post this, not the Primer page again. Nancy Klimas video. https://www.youtube.com/watch?v=c2vIQ92wU9Y --DxCFS (talk) 10:45, 2 March 2016 (PST)

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For the list of "Patient Groups and Charities" - maybe wait until the list on the main page is more complete - until then, use a link to the main page ? Another option is to compare both lists, regularly, and manually update this page. or have an outdated list. --Suelala (talk) 19:58, 25 March 2016 (PDT)

I have the citations on PEM w/o the template. I hope that is OK, I thought it best to get the citations in and if someone feels they should be in a template format they have the option to edit in.--DxCFS (talk) 10:39, 16 August 2016 (PDT)

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I can think of a few patients that would be fine with being interviewed but is there someone that can contact them so we can get the OK and plug their names in for this Primer? I am thinking L.A. Cooper, Hillary Johnson, Mary Gelpi, Clark Ellis, Brian Vastag and more. Perhaps someone getting in touch on Twitter or Facebook? We already have Tom Kindlon, Ryan Prior and Jennifer Brea.--DxCFS (talk) 18:37, 22 August 2016 (PDT)

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Do you think this new ad by Solve ME/CFS Initiative could fit in the section about using appropriate photos? Not that they could use it since it's probably copyrighted, but it could give the journalist an idea of what to look for, instead of photos of students cramming for finals. Kmdenmark (talk) 07:52, 3 September 2016 (PDT)

Good idea. I will note this is what many ME/CFS patients look like. Try to get real patients or stock photos that reflect the realities of the disease.--DxCFS (talk) 10:02, 3 September 2016 (PDT)

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Fixed the reference error. It was a typo --Samsara (talk) 13:29, 27 September 2016 (PDT)

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

See medically unexplained physical symptoms.

medically unexplained physical symptoms (MUPS) - Technically, this term means that no cause or explanation for the patient's symptoms has yet been found. However, patients diagnosed with "MUPS" are generally lumped into a psychosomatic, or psychologically-caused category by those in the medical profession, without any scientific basis for doing so.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

autoantibody An antibody that works against the body's own antigens, a hallmark of autoimmune diseases. Autoantibodies are the opposite of an antibodies.

A device with microscopic dimensions which measures electrical impedance across a blood cell. According to Ron Davis, the nanoneedle measured increased electrical impedance in the blood cells of 10 ME/CFS patients when stressed with salt, but not in healthy controls. Accordingly, this device has been proposed as a potential diagnostic test to distinguish ME/CFS patients from healthy controls. (Learn more: www.omf.ngo)

nanoneedle A device with microscopic dimensions which measures electrical impedance across a blood cell. According to Ron Davis, the nanoneedle measured increased electrical impedance in the blood cells of 10 ME/CFS patients when stressed with salt, but not in healthy controls. Accordingly, this device has been proposed as a potential diagnostic test to distinguish ME/CFS patients from healthy controls. (Learn more: www.omf.ngo)

metabolic trap hypothesis An hypothesis which proposes that the normal metabolic functioning of the cell has become "trapped" in an abnormal state, which may lead to body-wide symptoms.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.