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I'm concerned that the harms done by psychosomatic misdiagnosis in ME have so far failed to take into account the devastation this causes within families. I've long since lost count of the number of people I've heard describe the intense psychological trauma they are experiencing as a result of...

I understand they have a key role in making sure doctors are safe to practice - this is what they are absolutely failing to do with regard to ME patients and the long standing damaging GET disaster. Because they are 'respecting the right of a doctor to believe a disease does not exist' they are...

My thoughts, for what they are worth, are that: 1. The change in approach to ME/CFS patients has to be compulsory or the whole exercise will go nowhere. Doctors need to be held accountable, or rather need to be able to be held accountable, and the GMC is ignoring wholesale disregard of NG206...

He says preload failure is ubiquitous in this pt population. His word. If that’s so, hasn’t he solved the age old mystery of no biomarker for ME/CFS? Secondly, the Mestinon thing. I find it difficult to believe that a mainstream drug that’s been around forever has not been noticed before to be...

i reported the comment as offensive, explaining why as a person with M.E.

I dont understand why the presence of any other condition would negate a diagnosis of ME given that PEM (so ewhat arguably?) is only found in ME. If PEM is present in someone with MS do they not also have ME?

You may well be right, if I find out any more I will post an update. I wrote to Panorama to ask if this is true, but have had no reply. I haven't had a reply to my suggestion they do a documentary focussing on one of three areas - delayed assisted nutrition, false FII accusations/switched...

Indeed, he sounds completely confused.

We need improved access to university-level courses in order to be able to study - the current requirement to study minimum half-f/t hours per week is completely impractical for those who are severe, even those who are moderate, and online study is usually essential, otherwise we're burning up...

David comments about. They had that data, right. So they said oh, look pacing , people who did pacing, they felt better, people who stuck with pacing had less fatigue. Chaos. What in blazes is he talking about? People with M.E. pace to prevent deterioration. There may be a slight improvement...

Debunked by David Tuller recently, I think the figure has now been retracted

The pacing for ME really does need differentiating, as it is a safety issue, pacing to prevent PEM to reduce risk of deterioration and possibly bring a small improvement, not a means of rehabilitation or 'improving lifestyle' as described on one of the uk 'chronic fatigue' sites. I'm concerned...

Moved post A simple biomedical test that could identify ME/CFS might help those Very Severe who are trapped in terrible situations in the UK being denied assisted nutrition on the basis they must be psychologically refusing to eat - resulting in malnutrition to the point where they can no...

I'm not going to land my source in it without checking with them first. Currently they are not well, so will catch up at some point. I was only told because I was putting hours into writing to Panorama asking them to make an up to date programme on the crisis over children caught up in care...

So what are the possible work arounds? It must be possible somehow. (Envisages a lab in an adapted ice cream van playing the panorama theme tune visiting all the major towns and cities...I was hearing yesterday of an ME researcher so utterly fed up with the barrage of obstructions to his...

At least 'maverick' doctor Sarah Myhill was trying to get something done, and her instinct on mitochondrial involvement was bang on. I'm a completely beginner as a science student, but surely history suggests that progress needs both mainstream people and methods AND people who think and work...

I think people will be making their own minds up about the fibronectin tests, and what matters right now isn't whether or not people do have the tests but whether the results can be gathered centrally. It would seem sensible to ensure cost isn't a limiting factor for people who would like to...

Unfortunately I have no more information, just heard via a friend. Must have been a good programme though!

I've already written to them several times, and then found out apparently a very good Panorama programme was made in the last two years, but the SMC blocked its transmission (rumours of it all getting ugly), so it has been archived. There's no point in asking them to make another - the abuses in...