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it doesn't really. A pretend service does. Refusal to refer to a pretend service is understandable. I would not refer to the current "service", to spare the person with ME/CFS the likely resulting grief. The need to get referrals standard is a good point but I think it would distract from the...

That is a neat way of putting things. But we don't have a mechanistic story for ME/CFS so I don't think there is a solution of the sort being suggested. To me the solution is the caveat in ME/CFS diagnosis that the symptoms cannot be explained by some co-existing (partially) understood disease...

I am not sure what a ton of bricks is here. However, if you set up an advocacy site that encourages poor quality science associated with harmful and potentially lethal untested therapy as a result of your enthusiasm over-reachiing your knowledge of the field then I think something fairly clear...

That is interesting because around that time or a bit later I was invited to join ForwardME, and may main credential was the link to S4ME. I declined because there was a rule that you had to call ME/CFS "ME", and I think a rule that you were not supposed to express opinions independent of the...

It is easier if you want to use a drug that has already been tested for another disease. But I would welcome a pilot study of interferon antagonists if well thought out. You could probably treat five patients in sequence, watching out for adverse events before moving to the next patient. If the...

The trouble is that it says absolutely nothing about specifics. Adherence to NICE Guidelines is not necessarily a recommendation. What physicians were involved if any?

My guess is that antagonists might be more relevant but drugs with this sort of specificity are certainly what are likely to be more use than 'immunosuppression'. Probably an antagonist would. It might lead to an understanding of the main pathway, even if it turned out to link to interferon...

Only if autoantibodies are involved and the chances of that look to be significantly less than 50:50. And if you want to reduce autoantibodies you don't use old-fashioned immunosuppressants. They are hopeless for that.

I disagree. I raised how problematic it was to give publicity to the microclot team linked to an off-label related prescribing approach. This sort of poor quality science can and does cause major harm. Recently a physician I was talking to raised the problem of dealing with adverse events...

I think this is ostrich-speak Adrian. We live in a modern internet-based communication world. S4ME is the one place where anyone with ME/CFS can exchange views openly about UK service issues. It is also an excellent way of exchanging views with other countries. There are about 3000 members. Far...

It includes some sensible thinking but I couldn't find anything new and it labours arguments for far too long. It needs a succinct summary of what is thought to be new thinkning at the start. The 'set point' idea is very standard and not new.

A lot of autoimmune diseases are statistically associated but I am not aware of any special relation to Sjögren's. I would be wary of figures unless they come from formal epidemiology. B12 deficiency is common enough to check for in any one who is chronically unwell.

I think steroids have to be considered separately from other drugs. Drugs like azathioprine and mycophenylate aren't that good for autoimmune disease either. People have mostly give up using azathioprine and also cyclo because of long term cancer problems. Methotrexate has been used a lot for RA...

That seems a pretty odd thing to say. Is it an accusation? If so, on what basis? Who is shouting at people? I was under the impression that personally I had been working with a group of aptients for ten years now, writing documents in their support and doing my best to help and encourage. But...

OK, but that is an issue outside the current suggestion for a service format. I am sure we are all keen to see a forceful edict from the top. This is just what we think might be useful if that edict is in place. Nobody is offering to discuss edicts about referring. They are offering to discuss...

If FME is not there to influence policy then the working groups are presumably a complete waste of time?

So why was it (there is only one rule) applied to the NICE Round Table where there was a face off between political groups affecting half a million people's right to decent care? This seems ingenuous to me, Adrian.

I don't see it like that. The way I see it is that there is an awful lot at stake and we need to be honest with each other. I am not aware of anyone who has come here who has been treated unfairly. People have come here and exploded with abuse at the community and not returned, thank goodness...

MMP-8 is good old neutrophil collagenase I think. It chews up your tissues when you have an infection and want to clear things away (like making an exit for an abscess). I cannot see any likely relevance to ME/CFS. It is likely to be all over our gums.

Maybe the sort of repertoire shift that Audrey Ryback's work suggests or maybe low level autoreactivity to proteins involved in a disease process. The latter does happen sometimes. In RA there are slightly raised levels of antibodies to a range of self proteins, including heat shock proteins...