The whole thing seems totally incompetent.
Maybe the useful outcome will be that everyone, including MEA, may see that the people at BACME have not understood a thing. The obsession with the rehabilitative 'treatment' (that isn't) approach pervades everything I have seen so far.
Other forms of immune activation are unaddressed by inflammation, of course, but I am only too happy to invoke them in all sorts of ways in disease. Complement activation in the bloodstream is anti-inflammatory for instance. The response a vaccine prevents later inflammation. But when people...
No. But ASIA is supposed to inflammatory.
To be honest, I don't want to go into detail but this stuff is about as close Qanon a immunology gets. It is not only garbage but garbage intended to manipulate the gullible.
The cherry picking comment was spot on. It is a waste of time looking for...
It's terrible.The guy knows nothing about what he is talking about and simply regurgitates the worst sort of dumbed down textbook stuff. MS is not type 4. Factors are not just genetic and environmental... Nothing to do with HHV-6 as far as I know... I presume the rest of it is as bad.
This is...
And so far, there is pretty good evidence for ME/CFS not being associated with MHC genes. The largest data set so far available showed no signal if I remember rightly. Some suggestions from the past did not hold up.
I am sure it is. People are pushing for dedicated ME/CFS services with good intention but maybe not realising what that is likely to end up with. The new UK government has put emphasis on GPs being in charge of deciding what services there are and also on encouraging business. In the past...
So that leaves us with the ME specialist physicians, the carers and the patients. There are a lot of very raw nerves here and many of them are best passed over. But I think a strong message needs to be sent without pulling any punches. That is that treating people on the basis of speculative...
But the perceived charge is interesting. Spelling it out may clarify things. I think the point is that my denial of an evidence base for ME/CFS being a specific biomedical condition would provide ammunition for the psychiatrists. My perception was, and still is, the opposite. If I had made the...
Thank you for the welcome comments @Arvo.
I am sorry if I have been sounding grumpy and offensive. But I feel I have my rights to be a little that way at times. I was not intending to hang out the dirty washing on the writing of this piece but maybe it will do no harm to do a bit of that...
Yes, I think you are confusing different sorts of terms @Yann04.
PEM is not a defined process or thing. It is just the timing pattern of worsening of symptoms that is characteristic of the ME/CFS syndrome. OI tends to be fairly immediate or at least within minutes so pretty much by definition...
I can see that @Lucibee, but I spent about four months crafting and re-crafting the document with precisely that in mind - in fact deliberately weighting all the sections to take account of seven different perspectives that I could identify as relevant - physicians in colleges, psychiatrists...
@Sasha,
Do you have an example of the sort of thing you are thinking of?
There is a sort of Catch22 in the way you have described this. If there is an 'intervention' that yo have 'high hopes' of then presumably someone has either proposed this intervention as a therapy or someone has a theory...
Doing a review is leaving a commentary - that is all there is to it.
If more than three 'reviews' give a score of 3 or more I think the paper is considered 'peer-reviewed'.
I am afraid that is a trial. A trial does not have to have controls or more than 1 case. My initial rituximab trial had no controls and 5 cases. Because I had objective end-points it gave a reliable result. A trial can be done by non-medical people, including patients.
The problem is if...
That's a trial again, and it needs controls and enough patients.
For one person to do it would be hopeless. If they got better they would write to a journal but if they didn't they wouldn't - classic publication bias.
But that's a trial, @Trish. A case report is where you get a result without having set out to do so.
If we are talking of doing a trial you need a lot more than one case.
Not a lot really. I published a case report of someone with arthritis getting better after rituximab. I had already decided to use rituximab bu the case was brought to my attention. There were no measurements before treatment - there aren't in this situation.So we just noted that the person felt...
In practice I think that is right.
But there is a crucial message hidden away behind that. In reality, the demonstration of indisputable pathophysiology (rather than structural changes that in many diseases are either hard to pin down or even not there) rests on reliable proof of the efficacy...
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