Hi, I’m creating this thread because the Me-pedia primer for journalists is outdated. However, it is likely still being seen by many journalists: * The page gets hundreds of views per day * It is the first google search result for various searches related to journalism and reporting on ME * The other prominent search result, MEAction’s more recent guide on how to report on ME, directly recommends the me-pedia primer for journalists. See S4ME thread. Therefore, hopefully, we can slowly work on updating and polishing it.
Here's the link: https://me-pedia.org/wiki/Primer_for_journalists What is the best way to approach this? The text doesn't seem very wrong or inaccurate but mostly chaotic: some arguments are repeated in multiple subheadings etc.
I wonder if it is worth shortening it. If I was a journalist looking at that page, I might read the first paragraph, then quickly skim through the rest, be overwhelmed by the length and “chaos” and just go google the CDC page instead.
I don't think I was really aware it existed. Maybe the first thing to do is to see if the wiki will accept a note saying the page is in the process of being updated and reorganised? That might make it look a bit more credible, and give a hint to journalists that it's worth exploring other sources for the time being. I've never tried to edit anything, though, so I don't really know how it works.
After a very quick skim: There's a lot of this, & the usual "systemic neuroimmune..." style guff which would be better excised. I think this framing is a mistake. There's not much evidence that anyone can treat idiopathic CF either. Not to mention that "charlatans" by definition cannot treat anything. There are a few typos ("exasperate the flu-like symptoms"). I'd also very much disagree with listing FM, IBS, MCS and TMJ as "comorbids".
I agree, it should best be rather short and refer to other more respectable sources that provide more info. I've quickly written something down based on the info that was already on the page and other ME/CFS factsheets and guidelines. ME/CFS Myalgic encephalomyelitis (ME), sometimes referred to as chronic fatigue syndrome (CFS) is a serious and long-term illness. People with ME/CFS experience debilitating fatigue, non-refreshing sleep, and problems with memory or concentration. Other common symptoms include pain, gut issues, sensitivity to light and sound, and orthostatic intolerance (dizziness or nausea when upright). The hallmark symptom of ME/CFS is a marked worsening of the illness after exertion, often referred to as post-exertional malaise (PEM). Not chronic fatigue ME/CFS is not the same as chronic fatigue and it is important not to confuse both conditions. ME/CFS patients are severely ill not, fatigued. Most people with chronic fatigue do not meet ME/CFS diagnostic criteria and for many ME/CFS patients, fatigue is not their most debilitating symptom. It is therefore inaccurate to shorten ME/CFS to ‘chronic fatigue’ in the body of an article or its headline. Representative images The quality of life of persons with ME/CFS is severely reduced. The National Academy of Medicine estimates that at least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives. Functional impairment of ME/CFS can be greater than in disabling conditions such as multiple sclerosis, end-stage renal disease or congestive heart failure. Most patients with ME/CFS can no longer work or study and are forced to reduce their social activities. It is therefore inappropriate to use stock images of models in business clothing who are yawning or looking fatigued. This is not a good representation of ME/CFS. The German association ‘Deutsche Gesellschaft für ME/CFS’ has provided 32 professional photos for press use that adequately depict the reality of people living with ME/CFS. https://www.mecfs.de/stockphotos/ Disease burden and low funding ME/CFS affects approximately 0.4% of the population or 1 in 250 people. Economic costs due to ME/CFS are high. In the United States, estimates range from $36 to $51 billion per year, considering both lost wages and healthcare costs. In Europe, the illness affects approximately 2 European citizens and the annual burden of ME/CFS is estimated to be 40 billion euros annually. Despite its high disease burden, research on ME/CFS remains underfunded. One analysis of NIH funding found that ME/CFS research only receives 7% of the amount commensurate with its disease burden. A study contracted by the European Commission also identified ME/CFS as a high-burden, under-researched medical condition. Cause and pathology The cause and pathology of ME/CFS remain largely unknown. The illness is much more common in women than in men: approximately 75% of patients are female. Infections are also considered a risk factor. Longitudinal studies have shown that infectious diseases such as mononucleosis increase the chances of developing ME/CFS. Increased incidence has also been reported following Q-fever, Ross River Virus, giardiasis, and several other infections. Sars-Cov-2 leads to a higher risk of ME/CFS and a substantial proportion of patients with Long Covid meet ME/CFS diagnostic criteria. ME/CFS is suspected to have a genetic component. The DecodeME project in the UK has collected samples of more than 20,000 ME/CFS patients to perform a genome-wide analysis. Researchers have reported abnormalities in the immune system, metabolism, cardiovascular system, brain signalling, endothelial function, and other bodily functions of ME/CFS patients. However, most of these findings are not specific to ME/CFS (they are also found in other conditions) or have not been replicated by multiple research groups. Not a mental disorder Because there is no biomarker or diagnostic test, ME/CFS was incorrectly believed to be a mental disorder, an illness without disease, or a collection of symptoms that are ‘all in the mind’. This view is in contrast with scientific evidence and expert opinion. The Centers for Disease Control and Prevention (CDC), for example, states: "ME/CFS is a biological illness, not a psychologic disorder.” The World Health Organization classifies ME and CFS as Diseases of the Nervous System, using code 8E49 Postviral fatigue syndrome in the International Classiciation of Diseases. Treatment There are no Food and Drug Administration (FDA) or European Medicines Agency (EMA) approved treatments for ME/CFS. Physicians aim to reduce the impact of ME/CFS by managing or treating individual symptoms. The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) and the US Clinician's Coaltion have issued guidelines and advice on symptom management. In the past, graded exercise therapy (GET) was a popular treatment for ME/CFS. This was based on the idea that ME/CFS is perpetuated by deconditioning and avoidance of activity. In randomized trials, however, GET failed to increase employment rates and fitness levels of ME/CFS patients. Multiple reviews have evaluated the evidence supporting GET as low quality. In surveys, ME/CFS patients reported a worsening of their health following GET. The National Institutes of Health and Care Excellence (NICE) therefore actively recommends against GET and other exercise programs for ME/CFS. Cognitive behavioral therapy (CBT) may be offered to people with a new ME/CFS diagnosis to help them cope with the disease. CBT that assumes patients have 'abnormal' illness beliefs and behaviors as an underlying cause of their ME/CFS is no longer recommended by NICE. Surveys indicate that ME/CFS patients often find pacing useful. Pacing is a self-management strategy where activities are dosed so that patients can remain as active as possible without causing postexertional malaise. Psychosomatic theories and stigma Because blood tests often return normal and most patients are women, ME/CFS has historically been minimalized. The illness has inappropriately been called ‘yuppie flu’ and was once dismissed as hysteria. Patients have reported harm from psychosomatic theories that assume ME/CFS to be caused by abnormal illness beliefs and excessive resting behavior. This has been considered a barrier to appropriate patient care. 12 May: World ME Day ME/CFS organizations have advocated against stigma and for more recognition of the illness in research and the healthcare system. On 12 May, World ME/CFS Day, various awareness events are organized worldwide to highlight the millions of ME/CFS patients who have disappeared from public life because of their illness. These are often called ‘Millions Missing’ events, a campaign coordinated by the US-based ME Action Network. Reports and guidelines Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness - PubMed (nih.gov) Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE ME/CFS: The current state of knowledge | IQWiG.de ME/CFS Basics | ME/CFS | CDC Patient organizations Home - World ME Alliance Home - #MEAction Network The ME Association - The ME Association Start — Deutsche Gesellschaft für ME/CFS (mecfs.de) European ME Alliance - Home Page - A Voice for People with ME in Europe ME/CFS experts Luis Nacul Carmen Scheibenbogen Lucinda Bateman Nancy Klimas Anthony Komaroff Chris Ponting Karl Tronstad Examples of excellent reporting ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot | The Guardian Fatigue Is So Much More Than Being Tired - The Atlantic When the doctor doesn’t listen - Coda Story
I really like that. How should we do this. Do you want to directly overhaul the article with your draft, or should we maybe make an “invite only” google docs where people can make edits and comment, improving it until there is consensus to replace the original me-pedia page. Maybe we could even create a page in the draft namespace of me-pedia? So everyone can edit via me-pedia, and replace the original page when there is consensus.
All sound good to me. Depends a bit on the other MEpedia editors: will they revert big changes for example if we replace the current with the draft I posted above?
To be honest I’ve made probably about 50 odd changes in the past two months, and none of them have been reverted or as far as I know, even checked. I do know user:NotJustTired is pretty active so maybe we should ask them, not sure how to contact though. There doesn’t seem to be a draft namespace.
Perhaps we should just try it then. If I understand correctly, MEpedia automatically stores older version so if we want to restore something from it we can always go back to copy it.
These sources might also be useful: How to Report with Accuracy and Sensitivity on Contested Illnesses - The Open Notebook Journalists_-How-to-Report-on-ME_CFS.pdf (meaction.net)
Yeah. Go for it if you’d like. Might add up top in italics “This page is currently being overhauled. Apolgies for any inconveniences.” or something along those lines.
I really like it too. As @ME/CFS Skeptic has added a heading examples of excellent reporting, I wonder if next to it there should be a category of (and I can't think of the right way phrase this) reporting angles likely to add to patient stigma? Under that, we could highlight the confusion between CFS and chronic fatigue, the issue of mental disorders, and the psychosomatic theories—this might usefully include other problematic terms such as bodily distress, functional disorders, medically unexplained symptoms, and others. First thoughts on the order of the sections: ME/CFS (maybe this should end with quick links to the examples of excellent and problematic reporting, for anyone who's only skimming?) Symptoms (As it's included in even short reports I reckon we should include this, although not an offputtingly long version) Cause Treatment Disease burden & funding Reports & guidelines Patient organisations Reporting examples good/bad Representative images World ME Day I'm really unsure about the experts list, I think it might be a bit of a hostage to fortune. But maybe a list of current major research projects? I also wonder about links to blogs such as those by David Tuller and Brian Hughes? If anyone wants to do a deeper dive (including student journalists, who may have more time to read in depth), they're very useful sources.
could you give me a link to their blog, I’m not sure I’ve heard of them before, I’m eager to discover new ME blogs
Ohhhh, they're well worth reading! There are a lot of them, and it will probably make most sense if you read them in date order as and when you have the energy. https://thesciencebit.net/category/me-cfs/
I only did one edit, back in 2021 when I added my website to the otherwise completely empty "Hungary" page. I added it to the "Patient Groups" section with an accompanying explanation that there are no patient organizations here, just this website. A while later (looks like from the edits it was 6 months later) someone deleted that sentence but kept the link to my website, however, renaming it to "website of Ágnes Szarvas". So they actually went out of their way to check the website (written completely in Hungarian) and check who the author was in the About section. It was NotJustTired, the person you mentioned. So they do check edits I think, just not necessarily very quickly.
