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
• 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
• 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
• What about a graph or two on patient harm from GET & CBT
• 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
• The many pro-science patient groups, patient funded research plus Science4ME and Phoenix Rising could get a mention
• Biomarkers could do with a nanoneedle mention - we have a page on this study
• 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

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)

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.

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.

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.

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)

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.