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Yes, the problem is not the idea that every condition has biological, psychological and social aspects, but rather that the supposed advocates of the bps approach to ME/CFS (or CFS as they prefer to call it) are in fact focusing only on their belief that the condition can be improved and/or...

I had thought, perhaps wistfully, that Colin Barton would run out of steam and given the Society’s public face is very much him that it would gradually fade away too. Unfortunately he seems to have developed a fresh impetus and is reasserting his ‘bps’ biases on a nationally stage. I hate to...

An important article @dave30th Though anecdotal and from four decades ago, my previous work experience was that high profile abuse cases were more likely to trigger false positives than reveal missed cases. Anyone publishing research into these issues needs to seek objective data on rates of...

Why would a Bristol based researcher say, seek input from adult patients based in Sussex or Kent, rather than from those based in the South West?

The Cork nurses’ plight has my sympathy, I remember the ordeal of those years when I was not well enough to work but not yet psychologically ready to go for ill health retirement. Any financial support provides an important bridge that may enable some to eventually return to work, even if only...

A family member’s partner had anosmia after Covid lasting at least a least two years, I haven’t checked more recently if it is still an issue. Interestingly it was his only persistent symptom getting back to running half marathons and returning to an intellectually demanding job as soon as the...

Considered by whom? Not by the other ME charities or the ME community as a whole. Their parasitic relationship with a narrow group of partisan clinicians/researchers with an identifiable specific bias is illustrated by their high number of medical advisors, larger than most national charities...

A confusing point over and above the fact that more rapid fatiguability is different to PEM, is that this more rapid fatiguability of itself is likely to be a symptom of ME? Also circumstances where rapid fatiguability is evident will also contribute to triggering PEM. Further when in PEM more...

This evening’s BBC prime time news said that the Government was considering withdrawing the tax concessions associated with the Motability Scheme, such as VAT zero rating. Which is likely to price out some of the scheme’s users.

I have no idea of the scale of the issue, but know of one person at least diagnosed with FND and told by the consultant that it was synonymous with ME/CFS.

This story has made the BBC prime time national news bulletins.

I have been hesitating too. Obviously we all feel angry and frustrated at the failure of current services, particularly relating to those made worse by harmful pressure to increase activity and the failure to offer appropriate support for the very severe including those with feeding issues, at...

This seems to be a collection of anecdotes and social media opinions. Given potential harmful effects surely it is important that there are proper controlled trials before encouraging widespread use.

I just received an email from Crowd Justice seeking funding for this cause, I don’t know if it adds any information but it reads more clearly than information I have previously seen: Urgent support needed: Help secure specialist ME services through legal action Repeat of the link to the...

I grimace when yet another heavy vehicle drives over the verge outside my house meaning yet more reseeding is required, I must have FND too.

Yes!

I don’t understand this abstract, are they saying the putative FND diagnosis was a good thing or a bad thing? Are they saying rule in criteria for FND are a step forward or a step backwards? My take away, which may not be what the authors intended, is that if you plan to have significant...

I guess advocates of the software issues model of FND like this idea as it is rather like the IT support cliché of ‘have you tried switching off and on again’.

I selected ‘am not sure if I have SFN/tests inconclusive’, but have never considered if there is any possibility that I might have SFN, no medic has ever suggested it as possibility, but then I have never discussed any potential underlying medical issues relating to my ME/CFS with any doctor...

Has an option to indicate which country you are from, and all the headings made sense to an English speaker (ie me).