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Yes but to me the logical approach would be keeping the cytokine well down for a good while.

An Open Letter to British Association for Clinicians in ME/CFS in Response to the Document ‘Guide to Therapy’, 2025 Jonathan CW Edwards, Professor in Connective Tissue Medicine* Dr Michelle Bull, Chartered Physiotherapist Joan Crawford, Chartered Counselling Psychologist *Correspondence to...

Agreed. With that aim I have just sent off an open letter to BACME, copied to the DHSC people working on a new service template. It will have its own thread in a minute.

I have only read the introduction so far. There is little or no indication as to what this 'index' is for, except 'clinical assessment', whatever that may mean. The background refers to diagnostic criteria and the De Paul questionnaire and talks mostly of 'concept validity' and consistency in...

It was something that all doctors in my generation were aware of. The speculation that there had been an outbreak of 'ME' at the Royal Free Hospital in London which never materialised as a definable new viral disease.

It seems he is reluctantly admitting that we were right but cannot bring himself to cite the people who got long trm remissions in lupus in 2000 - Maria Leandro and myself (with Isenberg providing the patients somewhat reluctantly). I am reminded of a certain Sir Simon for various...

I think part of the problem is that 'ME' didn't in fact exist. It was a mistaken concept. ME/CFS does, but that is too complicated for most people.

I hadn't seen any media headlines on BPS theories then and I am not sure that there are now much. Are there? Most of the headlines I have seen over the years have been about people being terribly disabled and nobody taking notice - whether because of multiple allies or ME or Ehlers-Danlos. The...

Have had a reply from the expert, MacAulay. There are several things to continue discussion on but I note to start with that she considers that the original glymphatic theory is now seen to be flawed and that aquaporin 4 isn't relevant, whatever those channels might be doing. So at least some of...

I don't think that is true. Kids at school do not believe their friends with ME/CFS. Parents don't believe their children. Employers don't believe their workers. Because there is nothing to see. In general they have no knowledge of any biopsychosocial theories. Even when I retired as a doctor I...

And I do talk a lot about the closest gene, but almost always I mean the closest protein coding gene. I think it is very rare for the causal gene to be not a protein coding gene. Interestingly the gene tht casuses lack of pain my friends at UCL were interested in codes for a long non-coding...

If you read Edwards and Cambridge you will see that this is known to be true for the normal immune response. However, there are specific reasons for thinking that it may not be true for autoimmunity - a useful one being the fact that after 50-odd years of looking nobody has found convincing...

I am not being condescending. I am reporting what I know to be the situation. You might be very surprised to hear what it is but I am not in a position to say.

I do indeed know him. He was a great fan of T cell theories in 1998 but when I showed that rituximab worked and he showed that anti-T cell therapy didn't he joined my phase III rituximab trial. After I dissociated myself from Roche because they had failed to inform me of a death during my trial...

There aren't any ifs and buts but it is not good tactics to upset the wrong people. The anger needs to be directed at the physiicians who should be providing an expert service and aren't. The situation on the ground is more complicated than people think.

We don't differ on that.

Nobody is disputing that. But what I think people may miss is that those charged with looking after patients may not be BPS people at all. If there is nobody in a hospital with any commitment to ME/CFS patients are likely to end up under the care of doctors who have no idea what to do other...

No. I would need to refer to specific circumstances and that is against forum rules. I get information through back channels from patient advocates who say 'hold your horses, things are more complicated'. I cannot pass on confidential information but what I hear makes sense.

I still disagree. The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff. There is a problem with starving and torturing patients but it is often assumed to be the problem in all cases without adequate evidence. What gets reported in...

`Er, no. The concept of immune reset led to the emergence of potent depletion therapies for autoimmunity - as described quite specifically in Edwards and Cambridge BJR 1998. We explained why immune reset was a possible goal and suggested using the newly developed drug rituximab as a basis for B...