A masterlist of ME facts & the citations that support them

No, no -- I believe @Hip was referencing the RFI from 2016. For now, please continue adding to the Google doc. We can figure out how to integrate with specific pages as it comes up... although I agree that perhaps the advocacy stuff should become a document / pdf, and the science stuff we gather should go on the page that @Jen mentioned, with all of the body systems already laid out.

 

Symptoms -
see http://me-pedia.org/wiki/List_of_symptoms_in_ME_CFS for an extensive list - might be worth linking to from the page being created. Includes ICC & CCC plus long symptom list from CCC appendix


Also - is the aim to cover ME only or ME & CFS?

 

Hi @JaimeS ,

I've added a couple of references from the IOM about those with ME unable to work. I've included the exact quote and page number so it can be easily located, but feel free to reorganize it in whatever way you prefer.

 

Thanks!

 

Unable to edit on my device

Assuming this is still going please add

25% of patients severely or very severely affected
Citation: IOM report
https://www.nap.edu/read/19012/chapter/4?term=25+percent#32

25% of patients housebound, bedbound or reliant on wheelchairs
Citation: IOM report
https://www.nap.edu/read/19012/chapter/4?term=25+percent#32

Some patients too ill to even attempt to stand or to complete a simple questionnaire
Citation:
"Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England"
https://doi.org/10.1136/bmjopen-2017-020775

Bias:
Some measures of illness used in CFS cannot represent further deterioration
eg Chalder Fatigue Syndrome

Use of Oxford criteria
"For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to Canadian Consensus Criteria. The Pace trial and FINE trial used Oxford criteria."

"When studies using the broad Oxford criteria (Sharpe et al., 1991) were excluded, a virtual disappearance of effect for graded exercise therapy (GET), cognitive behaviour therapy (CBT) and other psychological therapies recommended by the NICE guidelines (National Institute for Health and Care Excellence (NICE), 2007) was revealed. "
both from
How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? 2017 Journal of Health Psychology: 1359105317695803. doi:10.1177/1359105317695803

Furthermore, the multiple case definitions for ME/CFS have hindered progress. In particular, continuing to use the Oxford definition may impair progress and cause harm. Therefore, for progress to occur, we recommend that this definition be retired; the ME/CFS community concur on a single case definition (even if it is not perfect); and patients, clinicians, and researchers agree on a definition for meaningful recovery.​

Citation:
Green, C. R., Cowan, P., Elk, R., O'Neil, K. M., & Rasmussen, A. L. (2015). National institutes of health pathways to prevention workshop: advancing the research on myalgic encephalomyelitis/chronic fatigue syndrome. Annals of Internal Medicine, 162(12), 860-865.
https://annals.org/aim/fullarticle/...-advancing-research-myalgic-encephalomyelitis

Wessely et al.’s 1990s’ RCT reported a 50-per cent recovery rate at trial end, yet only a 26-per cent recovery rate at 5-year follow-up and most of the patients classed as ‘recovered’ continued to report considerable problems with fatigue (Deale et al., 2001). A sister trial of the PACE trial, the FINE trial, found no substantive benefits over standard care using home-based nurse-provided CBT-GET in CFS patients at 70 weeks (Wearden et al., 2010). Across RCTs, recovery rates are inconsistent, do not mirror objective scoring of improvement and fall away over the long term.​

Citation:
The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model https://journals.sagepub.com/doi/10.1177/2055102919838907

Thus the Oxford criteria designated about 10-fold more females and males as CFS compared to the Fukuda criteria. This stark difference suggests that studies using the Oxford criteria have investigated largely mild fatigue and recruited fewer than 10% of “true” CFS subjects. Over 90% of Oxford CFS subjects were false positives when subsequently assessed using the more rigorous quadrant and Fukuda criteria.

Using Oxford criteria, CFS was designated in 19.9% of women (n = 297) (Table 2). These women were then divided into 5 groups by quadrant analysis and the HealthStyles exclusionary conditions. Astonishingly, one quarter (25.6%) of the Oxford CFS women fell into the healthy control quadrant.​

Both from Baraniuk
Chronic Fatigue Syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6407870/

Bias & Media bias

"By having a role on the [PACE trial] Steering Committee and Management Group, there was a de facto endorsement of the use of £5m of research funding to focus on behavioural treatments. Neither I nor the current Board of Trustees would agree to do this now, as reflected by our current research strategy, the focus of which is collaborative biomedical research.
I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm."[54]
Sonya Chowdhury, Chief Executive, Action for ME, Aug 2017
https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/​

A literature search identified all papers published on chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) in the Lancet between 1995 and 2000. Analysis of the findings revealed a bias towards the views of one school of thought and a lack of papers on the immunological or virological aspects of CFS. The lack of balance contrasts with the mainstream American journals, which generally covered a much wider range of subjects and views. We examine the arguments against covert editorial policies, and illustrate how the present situation in the UK is undermining the medical profession’s understanding of both CFS and ME.

Citation:
Chronic Fatigue Syndrome: Editorial Bias in The Lancet (2005)
http://www.axfordsabode.org.uk/me/lanbias1.htm​

 

Quotes

Media bias

A great tragedy in the UK re ME/CFS is the ongoing ignoring of patients and their concerns from institutions & professionals who claim to support patients - this paradox must be challenged. One cant claim patients are hostile militants, this is harm generating, stigmatisation. https://twitter.com/user/status/1034393030449680384


Stigma of BPS (actually just a psychosocial approach since biological treatments and symptoms are ignored/avoided)

...believing ME/CFS is a condition that can be cured by attitude and effort is stigmatizing, no matter how carefully you try to frame it. That’s harmful, for individuals who blame themselves (or get blamed) for their suffering, and for the collective of people deeply affected...
— Hilda Bastian, Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much
https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/

We found that portrayals of CFS/ME differ meaningfully, depending on gender. The psychological and emotional tended to be foregrounded where women were concerned and the scepticism surrounding CFS/ME as a “non disease” was much more evident. On some occasions this was dealt with directly, whilst on others it was “leaked in” or hinted at. This serves to delegitimise the illness in women. In contrast, the physical was usually foregrounded in the case of men suffering from the condition and their experiences were accredited greater legitimacy. https://www.tandfonline.com/doi/full/10.1080/14680777.2019.1595694​

Citation -
"Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers". Feminist Media Studies: 1–16.

The need for a stigma scale -
Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale. https://www.ncbi.nlm.nih.gov/m/pubmed/30183363/

Are Simon Wessely and colleagues1 really suggesting that we would be better off classifying chronic fatigue syndrome with tension headaches and premenstrual syndrome, alongside non-cardiac chest pain? Do they honestly believe that the differences between these conditions are of no clinical significance? Medicine is a science, and science demands precision.

Citation:
Ellen M Goudsmit, Functional Somatic Syndromes
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)76815-X/fulltext

There are still some doctors who believe these disorders are psychological in nature. Dr. Muhammad Yunus, a well-known researcher in the field of FM and CFID, refers to this belief as disturbed physician syndrome (DPS). He says,
"It is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say." [52]​

Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection

"The more muscle and/or brain power you lose, the longer the recovery periods become. In my case if I walk the 5 to 6 yards to the toilet and back, it takes 12 hours before I have enough muscle power to walk the same trivial distance again.
A minimal increase in a ME patient’s typical level of activity, has a dramatic negative impact on the ability to carry out both physical and cognitive activities of daily living [1,2]. In other words if you go over your limit you get a relapse and the bigger the relapse the less likely you are to recover from it. Whereby the severity of the symptom flare after moderate exercise is linked to cytokine activity [14]."

"My very high lactate levels after this trivial walk also show that this trivial walk is very strenuous exercise for me which I have been doing twice a day for a number of years and if exercise would really be the answer to this disease, on the one hand I would not have fallen ill with this disease and on the other I would have long exercised myself back to full fitness as my very high lactate levels show that I do my upmost."

"The participant, i.e. the writer of this article, i.e. me, is a patient who has been bedridden with severe ME for more than 10 years, after Graded Exercise Therapy caused a severe relapse from which I haven’t recovered so far. I was diagnosed with ME by 2 knowledgeable primary care physicians who in the absence of a diagnostic test for ME/CFS, used the 1994 Fukuda [33] and the Canadian Consensus Criteria [34] to diagnose the disease, and the diagnosis was later confirmed by a consultant neurologist and by using the International Consensus Criteria [2].
Prior to falling ill with pneumonia, which triggered my ME, I was fit and well, was hardly ever ill and was very sporty. I do not smoke, and hardly ever drink alcohol. I have a brown belt in judo; I’m a former Dutch national field hockey champion, captain of my team; I ran marathons (PB: 3.05), half marathons (PB: 1.19), and competed in quarter triathlons."

"It might sound strange but walking back and forth to the toilet is more difficult than running a marathon. However if you see my lactate levels of 8.0 mmol/l around the 5 minute mark, and 11.8 mmol/l around the 30 minutes mark, both produced by the same exercise, it means that the actual lactate production for this very trivial exercise is 19.8 mmol/l. That is a level that many professional athletes will never / not often reach and that sort of level of lactate makes it easy to understand why this trivial walk is so strenuous an exercise for me and more difficult than running a marathon. And it is therefore no wonder that I have severe loss of muscle power combined with severe muscle pain from this trivial walk to the toilet and back"
​

all from Citation -
Mark Vink (2015)
The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://www.researchgate.net/public...gic_EncephalomyelitisChronic_Fatigue_Syndrome