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I don't think there is any convincing evidence here. People with ME/CFS have gut pains. The fact that these drugs show up in a top 100 is surely meaningless. They are likely very often prescribed because of the meme about MCAS. We need a level playing field. The eleve of evidence needed has to...

I don't know how much that is a regional thing and how much a reflection of government neglect of health care provision since 2010. When I retired in 2010 our rheumatology waiting time was around 3 weeks and 2 weeks for urgent cases. That was achieved in the previous decade by recruiting staff...

I would be a bit less pessimistic. The DHSC people seem to have taken on board the idea that mental health services should not be involved in this. I think it is useful to point out that there is no valid reason to treat ME/CFS as psychosomatic (and that the psychosomatic/deconditioning model on...

I will add something.

Until there are specialist physicians to refer to GP will continue to ignore ME/CFS as a non-disease. Attempts at education of GPs and students will either fail completely or elicit lip service responses. As long as GPs think they can handle this the situation will go nowhere. Maybe some...

I think this is the same in the UK. But you don't get anywhere by acquiescing to a crazy policy that lets people die and prevents any progress in research. The role of GPs would be the same as for any other disease - MS, RA, diabetes. The suggested plan is for a referral service. That may...

This is a useful point. At the moment the alternatives seem to be management based on unfounded theories about energy etc. or based on the collective experience of the value of avoiding post-exertional malaise. It seems that some are wanting to be even more stringent in justifying policy than...

Did anyone really think it did anything? I guess some did. I don't remember seeing any decent evidence.

I have looked at this over a long period and I don't think Afrin has provided a good case for a concept of MCAS. Afrin is very much out on a limb on this. As far as I am aware the allergy category is all we need when it comes to indications for antihistamines. There is a huge amount of...

It will be unclear if you are not a physician, I admit. It means that expertise in differential diagnosis (which is the main requirement) depends a lot of seeing people with other diagnoses to see the contrast. It also means that when you have a difficult decision on management with one disease...

Withholding medicines already prescribed is always something to be very cautious about. The idea, however, is to suggest a format for instigating treatments and unless there are normal indications I don't accept a need to use medicine off label. I have not seen any evidence for antihistamines...

Sadly not.

Yes, that sounds right. It probably should be specialist nurse but CNS is probably the official title. It reminds me of the days of nurse consultants. I briefly looked after a labour minister of heath and while chatting I mentioned that it was a pity that to earn a decent salary nurses had to...

I have been jotting. Likely lots of things for people to disagree with but this is what I ended up with so far: Suggested Service Provision Format for ME/CF The following is a draft outline for a service format for ME/CFS in the UK based on current evidence relating to patient needs. Key...

I am not aware of 'different types of OTs' just OTs in different sorts of jobs with different duties.

I don't think you can prohibit involvement of any of these people, since there will be times when they are needed. I suspect that enlightened counselling psychologists may be at least as helpful as anyone else for someone with ME/CFS. I think the strategy has to be to stipulate other staffing...

By far the biggest problems with muscle biopsy are sampling variation and drying out. I doubt that getting the same amount of readable tissue with 3 small needle hits is going to be less traumatic than one bigger needle hit. I would also worry that a small needle may glance off pathological...

Yes, but Yuppie Flu is not the BPS story. It is "serves them right burning out trying to make leads of money and then expecting sympathy when they feel tired".

Yes, but that is the problem isn't it? They will think their cherry-picked retrospective study is 'well-designed'. I think controlled is actually the right word if one goes in to what is needed (a relevant comparator) and would work fairly well in the context. But it very obviously isn't to...

I will add those in. It may be getting a bit messy but format can be reviewed.