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I did regularly have my arms falling asleep when I was much more severely impaired and largely bed-bound, I attributed this to spending several years lying down, a combination of postural issues and deconditioning. More recently as I spend more time upright my legs more often go to sleep if I...

My experience of recovery from PEM is enormously variable. At times my recovery can be like yours in that if (after several days and some insomnia) I do manage to get a good night’s sleep it may be gone when I wake up, alternately it can fade gradually over a longer period, or if I am in a...

I have assumed, as with @duncan, that some degree of orthostatic intolerance is very common, or even ubiquitous, in ME/CFS. However we do not have a good way to reliably confirm its presence in milder forms. I suspect for a lot of milder ME/CFS OI of itself does not trigger obvious symptoms but...

This is not intended to be an exact definition but disproportionate fatigue and or worsening of symptoms is a feature of many conditions including such as MS or stroke or even such as flue. We tend here to label this increased or more rapid fatiguability. This may overlap with such labels as...

Such a shame you did not get funding for this study. I feel it would be very useful in the absence of an understanding of ME’s aetiology to have a good quantitative as well as qualitative description of symptom variation between and within individuals.

I wish I had the energy and time up to spread food over more than an eight hour window. At my worst, when my orthostatic issues were also at their worst I was only managing one meal a day.

My initial reaction to Jeremy Hunt as a Parliamentary Champion was very negative, however on further reflection and further announcements of other Champions, I have to recognise Action for ME have got together a very broad range of parliamentarians: Fleur Anderson MP Debbie Abrahams MP Baroness...

There was a post raising this on the MEA Facebook page, but I didn’t feel robust enough to read it. I am at the stage of expecting the worst with everything.

Action for ME have responded to the predominantly negative comments on their Facebook page

Moved posts I don’t know if we have a specific Action for ME thread, but I have not been able to find it. However I came across on Facebook their announcement that they have appointed Sir Jeremy Hunt as their latest Parliamentary Champion. See In the comments under the post this...

Having worked in Scotland around the time of ‘the Orkney Satanic Abuse Scandal’, I was aware of some medical staff being primed to see abuse when there was none. My experience related to such as autistic children where their atypical behaviour was misinterpreted as signalling abuse rather than...

So important for the very severe. I suspect, at least in the initial setting up, as with most health care for ME/CFS, there was little understanding of how severe very severe ME/CFS can be.

My problem in responding to the poll is ‘what time scale are we talking about’? Ultimately AI will give us important answers, but I feel that is at least years if not decades in the future.

This is a shame, as I would have thought managing feeding and non oral feeding is tge biggest justification for such a service.

Trump’s ’big beautiful bill’ that has already been passed has dramatically cut health funding and means individuals’ health insurance may increase by some 75%. Some rural hospitals and clinics are already closing. The Democrats are seeking to use their power to shut down the government to force...

I had been thinking of your experiences @Wyva throughout this thread, so was expecting you to comment at some point. You have my sympathy, I must admit I have stopped following most of the ME Facebook pages I previously followed, that focused on people sharing their experiences as I found it so...

I don’t know if it is clarified in the actual article, but the abstract seems to confound gluten intolerance and wheat intolerance. Presumably everyone with a gluten intolerance is consequently wheat intolerant however not everyone who is wheat intolerant is gluten intolerant. There are...

This issue illustrates how let down we are by medicine. On diagnosis how many people are told how little we know or understand about our condition, that the prognosis is uncertain but that the vast majority will never recover? How many are told there are no curative treatments, just symptom...

Sorry this is not based on anything in the review, but given the seemingly common misattribution of paediatric ME/CFS to some form of parent/carer fabrication and/or treatment refusal, do we need an additional diagnostic category of medical denial/falsification relating to a genuine biomedical...

I am struggling to read anything this evening, but am I understanding correctly that ‘paediatric condition falsification’ is basically Munchausen syndrome by Proxy?