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I haven't seen Bob to ask. He stopped coming to Division seminars because he was fed up with people having slides full of vast amounts of unreadable data.

That only applies to certain types of illness. We forget the extent of ignorance. And even if there is no need for other diseases that is still no explanation for ME/CFS. What I see is not just sharing information but claiming authority for stuff you know nothing about and thinking you are...

I would be more optimistic. I see the reality that a group of studies, including DecodeME, the Precision Life studies, some studies done by people like Simon and Audrey and one or two other more peripheral things have given us quite a good overall picture of the disease. And that situation is...

Maybe, but that is not the history of how S4ME came into being - quite the opposite.

Absolutely. Departments have policies of not seeing ME/CFS on their commissioning profiles. But they can always say someone else is supposed to do it. The letter proposing a ban on ME/CFS research is probably still on file but it will get forgotten as time goes by. I disagree. I think every...

Yes, but then that was the problem with missionaries in darkest Africa. I don't know whether I have seen anyone change their minds. That sort of enlightenment I do see - it was pretty much what happened to me. These people know very well that what they are putting out is criticised by...

The psychobabble is just fancy words for the prejudices ordinary people always had about those who claim to be sick but have nothing to show for it. To the man in the street, who is also the doctor in the clinic, the psychobabble stuff is 'obviously' right.

https://michaelrscomamd.com/

I agree with Robert that there may be a role for this. It sounds as if it would be along the lines of the factsheet project. One thing S4ME doesn't seem to do much is have a presentation page with quick links to information snippets, which most advocacy organisations will have. I can see an...

Both, I suppose. They clearly do not understand the science, despite proclaiming they know all about it. They also do not stop to consider how much harm they might be doing.

Well yes, but I am not advocating waiting. I am suggesting that the biobabble may have an important negative impact and since we have to do everything we can it makes sense to try to reduce it, especially amongst advocacy groups interacting with government. How do we know that if we haven't...

I have interacted with Charles a lot over the years. He seems to be taking a back seat these days, maybe he has not been so well. More people are needed.

That is not in doubt. But it doesn't alter the potential harm from the memes being perpetuated by the community. Yes, but that is not currently an option. There simply aren't any doctors to talk sense. But we have been doing this with careful wording for eight years now. And the people who...

I am glad you are not wasting time on this, Andy. My worry is that this is not a small radical splinter group. These memes are showcased by advocacy groups who have got the ear of the DHSC. There have been bids to set up services for severe patients using off label treatments. We have had...

I think part of the answer is just keep trying. I didn't often tell my daughter what was good behaviour and what was not. When I did she appeared to ignore anything I said. But over the years I realised that she had registered it. Sometimes things take a while to sink in. And it may be more a...

I appreciate the generosity of spirit of the membership but I think there is an irony here. The people with ME/CFS and associated charity advocates putting out misleading information are not in a position of ignorance. They are well aware that members are here, sensibly and with generosity of...

Yes, but what does that mean. The government will happily nod to that - some nice special rehab, as in Yorkshire.

I still disagree. People with illnesses should not be setting up facebook pages purporting to provide information that is just a re-hash of physician bullshit. And it is notable that the high profile people who do have these pages mostly do that. I am certainly not blaming patients who may get...

That does not alter the fact that the people perpetuating these memes are spreading harm. They have a responsibility too. First do no harm applies to everybody, not just doctors. And the problem here is not the psychobabble. It is the neuroimmunobabble, which is just as bad. The psychobabble is...

I have been looking in to the literature on CA10 ahead of talking to the UCL pain geneticists. We seem to be up against two issues. One is that chronic widespread pain gets defined very vaguely and probably not very usefully. I suspect what is really needed are studies of chronic pain for which...