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Agree @mango, CSS theory for ME is not harmless as evidenced with claiming CBT can challenge negative thoughts that in some weird and magical way are effecting the brain signals. These sensitised brain signals are allegedly according to the CSS theory also causing the exertion problems and can...

Also aren’t there possible other causes for sensitivity to light, sound etc than central sensitisation? Do people with brain damage or inflammation also experience sensory sensitivity?

Also muscle and nerve pain can be part of the ME symptom picture and may not be co mobrbid fibromyalgia

Absolutely, fully agree. Tim Noakes theory I referred to discussed in Marchant’s book about CFS shows he has a a very poor understanding of how ME affects the body and wrongly focuses on fatigue alone. As we know, ME, is a multi system illness with a myriad of symptoms and further post...

And the final two pages on Noakes theory of CFS from Marchant’s book.

@Michiel Tack, in case it is of interest I will attach screenshots of the pages in the Jo Marchant book discussing Tim Noakes theory on CFS. It has developed from his earlier theory that fatigue in exercise is not due to muscles reaching their limit but writes Jo Marchant ‘that the brain acts in...

@Michiel Tack, fully agree. There is no way they should be pushing this theory and desentisation treatment in the form of graded exercise/activity in clinical guidelines with no firm evidence and whilst there is other research showing possible other causes for the symptoms including the energy...

To add, UK author, Jo Marchant, in her book called Cure - A Journey into the Science of Mind over Body - published in 2016 discussed how a well known South African sports physiologist, Tim Noakes, is claiming the fatigue in ‘CFS’ is mediated through sensitised faulty brain signals telling the...

Thank you @Michiel Tack for writing this excellent explanation of the dangers of the central sensitisation theory for ME. It beggars belief that once again clinical guidelines across different countries are promoting harmful graded exercise for patients with ME overlaying another theory with a...

Ok, thanks @JaimeS

@adambeyoncelowe, reading the study again, I agree with your interpretation.

Yes, i agree it was a nonsense study, but that is the point is it not that the IOM SEID can be open to being applied very badly. Edit: I note Medfeb says this could happen with any criteria if not operationalised properly not only IOM, fair point. However, as icc has neuro and immune symptoms...

Sorry I did not make clear in my post I was referring to Medfeb sharing the HHS are using any criteria for research. A bit harsh to indirectly imply I am stupid. Also ICC could be used for both diagnostic and research, CDC are choosing not to do this promoting IOM SEID for diagnostic. Some of...

Ok, I have slowly read through this thread after putting the petition up. I have learnt some disagree with Jason’s definition of PEM when doing his SEID studies. Apologies I am not doing well at the mo physically so my points will not be particularly cogent! I don’t know how to multi quote...

That is extremely concerning.

Very true, but there were still a group of doctors supporting ME was a biomedical illness and they even held a symposium in 1978 at the Royal Society of Medicine to discuss avenues of future biomedical research etc. Link here https://me-pedia.org/wiki/1978_-_Symposium

Thank you @DxRevision watch for your further helpful reply. Although I long for a universally accepted ME diagnostic criteria, i hope my comments did not suggest I am not very grateful for your tireless work over the years and the positive things you have achieved for this community. Thank you.

Thank you @DxRevision watch for your detailed response. I appreciate as there is not yet universal acceptance of a single criteria set that distinguishes ME from CFS, my wish that ME and CFS were not treated as the synonyms in the updated SNOMED isn’t going to happen yet. Likewise I know the ICD...

Although I appreciate it is good news that ME is back under neurological and not shunted under a mental disorder, I still don’t think it’s helpful to have CFS and ME as synonym. I appreciate many with a CFS diagnosis will actually meet ME criteria but not all.

The ICC was created by consensus from a panel of clinicians and researchers who have had years of experience working with people with ME.