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ME/CFS was part of Yunus' CSS-theory for years and now he omittted it because, in his own words, there is insufficient evidence for CS in ME/CFS. So you might use that in advocacy to challenge any doctor/researcher who classifies ME/CFS under CSS.

CS, as it has been shown in experimental research, is always related tot tissue damage and inflammation. All sorts of neurotransmitters like substance P, prostaglandins and glutamate are then released at the site of injury that makes the CNS more susceptible to pain stimuli. When the Belgian...

Sorry to hear that. Where are you from, exactly? (if you rather not tell, for privacy reasons that's ok). In advocacy you might point to Muhammed Yunus' 2015 article (where he drops ME/CFS from his CSS-theory): https://www.ncbi.nlm.nih.gov/pubmed/26138918. Yunus is the originator of the CSS...

Thanks. It was intended as a warning for ME/CFS patient organizations around the world. I hope MEAction or the ME Global Chronicle will publish it.

Thanks for that information. This is of course the main problem: researchers have to prove that brain signals are false, before exclaiming this to be the case or using this hypothesis in clinical guidelines. When it comes to CS (the extended definition) evidence points towards just the opposite...

It can and has been done, I mention it in the text: "Some studies [18, 19] have shown a generalized hyperalgesia (increased sensitivity to pain) in ME/CFS patients that was not present in controls." One can however question the validity of these studies. In my opinion the question is unresolved...

Thanks for your response Graham. I do however disagree. The word sensitization in CS doesn’t refer to coping with pain or being less tough in dealing with it. It refers to changes in the excitability of the nervous system. If you for example break your leg or cut your arm, the area surrounding...

No

Fascinating. Perhaps you should tweet that, to get the word out in the community.

References: Fordyce W, McMahon R, Rainwater G, Jackins S, Questad K, Murphy T, et al. Pain complaint-exercise performance relationship in chronic pain. Pain. 1981; 10(3): 311-21. Linton SJ. The relationship between activity and chronic back pain. Pain. 1985; 21: 289-294. Lethem J, Slade PD...

Central sensitization: a matter of concern In 1981 Wilbert E. Fordyce challenged conventional wisdom. In one of the most influential findings in modern pain research, he reported a negative relationship between exercise and pain [1]. A subsequent study by Steven Linton confirmed these results...

In its International Classification of Disease (ICD-10, 1996)10, the World Health Organisation (WHO) categorises ‘CFS’ under the heading of ‘Symptoms, Signs and Abnormal Clinical and Laboratory Findings, Not Elsewhere Classified (R00-R99)’. This is a rookie mistake. CFS is classified in the...

Prevalence rates range from X to Y. This variation is due in part to the variety of definitionsused and sampling methods. This suggests you’re going to use the lowest prevalence in all studies as X and the highest in all studies as Y. The CDC once estimated the prevalence to be 0,01% or even...

Perhaps in the introduction you could make the point that the estimated prevalence (using the Fukuda-criteria) is somewhere between 0,2%-0,4%, cite the major studies, and then later show the wide range of % reported by others and the different rates per country. I'm concerned that if you present...

I don't know if that's the best way to go forward, since there are very few qualitative studies on epidemiology. I would focus on the major ones (Jason et al. 1999, Reyes et al. 2003, and perhaps also Nacul 2011) and reference the other ones as extra information (or even a curiosum), in a...

I would focus this googledoc more on facts, figures and quotes that can be used for advocacy purposes and leave the listing of biomedical abnormalities to MEpedia.

I would have let them rate the different centres and each treatment modality (CBT, GET, Pacing, length of stay or whatever) separately on a score from 'very helpful' to made 'my condition seriously worse' . Then you could compare the acceptance of each aspect of treatment.

Thanks Kalliope, I suppose this means that patients preferred the biomedical centres (unless some BPS-centres also provided adequate information about PEM?). It's a bit weird that a large survey like this, involving multiple centres with different ideologies, did not assess the differences...

Did the report measure patients' opinion on CBT? Is it correct to state that patients favoured the biomedical centres? The English summary only notes a preference for good information on PEM. Does it provide more information on the remarkable statement: "Several centres with a biopsychosocial...

Thanks. I see you are Norwegian. Can you tell us more about the report, things that aren't in the English summary?