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hEDS is a meaningless category that can cover anything between 20% and 0.0002% of the population. I don't know what hEDS-like symptoms would be, other than pain from joint subluxation. All forms of EDS are by definition monogenic and cases of pure hypermobile type with known monogenic defects or...

Copied from this thread hEDS is a meaningless category that can cover anything between 20% and 0.0002% of the population. I don't know what hEDS-like symptoms would be, other than pain from joint subluxation. All forms of EDS are by definition monogenic and cases of pure hypermobile type with...

I was never much good at that sort of thing I am afraid. You seem to express your position very clearly and I suspect your instincts are what you should follow.

You are missing the point. This is not nefarious intent. The people involved no doubt think they are doing good, just like the missionaries did. But believing you are doing good is not good enough. You have to check your facts. I realise that the wording was not ideal 'deliberately putting out...

Well now you have!

So that situation is completely different from the ME/CFS situation where we have letters showing that doctors have tried to make very sure they can stop treating people with ME/CFS. ME/CFS at UCLH was shunted off to the Homeopathic Hospital to have voodoo treatment so that nobody else needed to...

But this is not what this discussion is about. It is not about patients standing up to doctors. It is about patients and advocacy groups deliberately and proactively spreading misinformation to other patients. About people with Facebook pages talking about brain damage or charities doing a sheaf...

It is hard to know whether one can extrapolate usefully from neurotropic viruses. I don't to what extent these two are neurotropic in mice.

I think so. Some are already fading out of the picture. I think some of the new zealots may actually take notice if we are pointing out that microclots and neuroinflammation are at present mere speculations.

I have thought quite a bit about that and from my perspective it is because the forum started in 2017 and the first official/authoritative usage of ME/CFS I know of is the NICE 2021 guideline. The CCC people had chosen it in 2003 but things had been fluid. The research community had settled on...

Well, I have tried keeping quiet about it for about ten years now and the situation just seems to get worse. I find it hard to dissociate the right thing to do from trying to avoid deaths.

Yes, that was the point, if put slightly differently. And note that I had said that the department welcomed people with pain and fatigue in the 1990s and enthused about developing a service. They were put off in the 2000s by all the people with 'hypermobility syndrome' who came with memes about...

I don't think this makes any difference to the great majority of people with ME/CFS. After all there are no treatments. But if means a destroyed life for one or two people it is important. There is the knock on effect that if these memes are prevalent in advocacy and charity groups then you...

No this would be if the trial was positive and the treatment was licensed. In other words the writer did not want to be providing an effective ME/CFS service in the future.

Correction to post 111. This correspondence was on a separate occasion. So the issue was raised twice.

I don't have the letter yet, although I have evidence that I received a copy. I think the email trail may be lost though. We may still find it. This was from subsequent correspondence, which gives a flavour: "The hypermobility service was not a problem in the beginning. It was only later that...

No I don't. I might be able to get one.

I don't think it is as strightforward as that but the GMC have indeed been involved with some physicians.

I am quite sure that the second form of words makes things worse. I think that is enough.

Bob would be convinced if I got on to him. It is time for a new type of ME/CFS charity but in the UK my feeling is that that is more likely to be built out of reshaping Action for ME in ways that have already been embarked on rather than creating something new.