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I think it would be very helpful in this situation if @Jonathan Edwards, with input from members, wrote an article setting out the evidence for and against the usefulness and validity of MCAS and hEDS as diagnostic labels, his views and his concerns, particularly in the context of these being...

Is anyone coming down hard on patients for believing what their doctors tell them? I haven't seen that. I have seen concerns about advocacy organisations that state MCAS, hEDS and POTS are established co-morbidities with ME/CFS without providing evidence. I have seen concern about doctors...

Thank you @Nightsong and @Suffolkres. Your information is seriously worrying. What on earth are the MEA doing. I despair. I haven't dared to ask what's happening in my local area (Dorset). Last I heard they were full on BACME with added quackery. I note that the MEA AGM is coming up shortly...

That's interesting, do you have a source you can link for this?

It occurs to me that the situation in the UK and the USA may be quite different. When confronted with a patient with ME/CFS who also says they have been diagnosed with MCAS, hEDS, and possibly also POTS, FM, IBS etc I imagine these scenarios: The USA doctor thinks, great, lots of drugs I can...

Does anyone know how 'unrefreshing sleep' became a core feature in so many ME/CFS diagnostic criteria? Why that, rather than, say, pain or OI or digestive system problems? It doesn't seem to be universal among people diagnosed with ME/CFS with PEM.

Would it be better to wait for the published version?

Regardless of how well or badly I sleep, I feel crap on waking. It's not about being tired, it's feeling ill and unable to function. I need several hours from waking to being able to do anything useful. In PEM I get tired but wired nights and lose a lot of sleep, especially on the first night...

Moderator note Moderators have reviewed the recent discussion on this thread. We have removed comments that focused more on other posters than on the thread subject, and replies to those comments. Where there are different views, discussion is more productive, and easier for others to follow...

I hope others in the UK are OK after last night's storm. I'm grateful not to be among the thousands who have lost electricity. As for the heat and bushfires in Australia. You have my sympathy. Having grown up in Adelaide and lived for a while in Sydney in the years when nobody but the wealthy...

This looks like a lot of work and some interesting results. I don't have the knowledge to understand all the details but I have read parts of it and found the discussion readable and refreshingly clear about the limitations and what needs to be done next. I was also pleased to see the name...

That's fascinating. So after all these years of drugs, therapy and exercise for depression, they are all equally mildly effective and/or ineffective, and all the trials are crap.

I suspect any question put to the relevant minister about problems with clinics using unevidenced treatments would be batted back as being the concern of the NHS, NICE and the ICB's not government ministers. And you would get the usual stock answer about ICB's providing services according to...

I had hoped that one consequence of so many clinicians around the world getting ME/CFS fromCovid would have woken up their colleagues to the failure of BPS approaches, but it seems clinicians who are very sick get treated just as badly. A few with family members affected see the harm, but I...

I think this is unfair to an individual to expect this much from her. Katharine did her best to lay out clearly the serious problems very sick people with ME/CFS face in her article. That will, I hope hit home with at least some readers. Not everyone here agrees that the net result of including...

Insanity is doing the same thing over and over and expecting a different result, Einstein (allegedly), a rant about psychobehavioural research by me. This morning I skimmed a zillionth research report of a clinical trial comparing two versions of essentially the same psychobehavioural...

It seems blindingly obvious to me that anyone who experiences PEM will opt not to participate in this study or will need to adapt their goals to exclude the activity increases. There doesn't seem to be any understanding of PEM, which is dismissed with a brief inadequate description and is not...

I think part of the problem with asking Katharine to try to influence the RCP is that as far as I know she is not a clinician, so the doctors at the RCP would see no reason to listen to her views on what sort of services the NHS should provide for pwME.

We need the ME/CFS patient organisations to make a united effort to push back against the approach being pushed by the RCP in this special issue. Katharine Cheston can't be expected to do this on her own, but I hope now she has been alerted to the problem she may be able to do whatever she can...

Sigh. This is so bad. No mention of PEM or risk of harm. Whatever happened to convalescence.