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OK for me that begs the question what is cfs? Is it a real disease then? ETA: also, this brings up a problem of terminology for the whole community in that many of us think of our illness in terms of ME and many of the validating studies are being done in the US with the term cfs. So am...

Given that M Sharpe has now come out on twitter and admitted that they were studying chronic fatigue as opposed to ME should not all future research in this area clearly differentiate between the two and flatly state that ME is not being researched (or alternatively clearly state that they are...

Thank-you @Jonathan Edwards for some very clear and thoughtful explaining. I don't know if this will make a difference but I think (not sure) that the paper I linked to is a repeat study to validate another from 2014 here: https://www.ncbi.nlm.nih.gov/pubmed/24572257 It seems to be a small...

I'm hoping that by providing the following link there may be some information there that could be useful to a further discussion of MUS in general. Link is to a PDF file written by Sirous Mobini (2015) Neuropsychology UCL It may provide insight into how the BPS view MUS as their domain...

Thanks @Melanie for your response.

This is related to ME but I didn't see where else this might belong. So it's here: https://www.ncbi.nlm.nih.gov/pubmed/29618472 I would like to have some thoughts on this research if anyone is able. @Jonathan Edwards perhaps? POTS is such a huge co-morbid issue for many of us. Though I...

You might want to encourage more dialogue on the subject of MUS (medically unexplained symptoms) here: https://www.s4me.info/threads/must-fight-mus.2626/

Is ME an environmental illness. I don't know. Can it be triggered by an environmental stimulus -- I think it can. I expect that even multiple triggers might be a factor for some. I don't have an issue with ME under the rubric of EI in Ontario so long as it is seen as physical disease...

Well, there's this as a clue: https://researchportal.bath.ac.uk/en/persons/jo-daniels

Futile thought but I'd like to know how people considering signing up for this mess, I mean study, can be warned off -- that it would only be used to create nonsense through disingenuous interpretations.

This is just my opinion but I think you are over confident that because we are the inhabiters of the current most recent time that somehow we are too sophisticated to make silly mistakes of nomenclature. I doubt this is really the case especially for poorly understood disease. Although this...

It didn't look that bad to me. It looks like it's written by someone who checked that their info is up to date but have had no real connection with this illness from personal experience. No doubt his knowledge is probably on the shallow side with maybe not any idea of the issues around...

Perhaps written by this person? https://lindagask.com/ ETA: It seems our Anil Van Der Zee is familiar with her as I see a comment on a blog article there. Would love to see a rebuttal argument.

No, the linked article was just a pointer. The evidence is in 'Thirty years of distain' Mary Dimmock I believe is a forum member (medfeb?) along with her son (IIRC) mfairma

I think this has been well documented by people like Mary Dimmock and through freedom of information requests where it has been discussed between the relevant parties including Stephen Strauss. But this is old news and I have forgotten most of the details. http://me-pedia.org/wiki/Mary_Dimmock

For me the problem is that rationality (and in my opinion this is how you are looking at the issue of naming) doesn't enter into it. The history of this illness is strewn with words that have been given their own unique meaning. And when the illness was relabelled as cfs it was with the...

Posting with the hope that someone here might find this article illuminating/interesting and possibly discussion worthy. http://eiko-fried.com/all-mental-disorders-are-brain-disorders-not/ Also, the link within the text to this...

My opinion is that Wessely et al calling harassment to some of the comments I've read on the forums here and on PR is just a another political tool to suppress speech. The idea that they would feel threatened is plain silly. And yes some people who read such things will want to believe it. I...

You've actually highlighted an area of real need. It's unfortunate there is not more out there. If you do find anything useful or find other resources it would be good to hear about it.

I don't see it that way. @petrichor every day in all kinds of situations we make judgments based on limited data. It's an important skill to teach our children how to function in life by helping them to take what data there is available and to use the mental tools available to decide whether...