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NICE need to take responsibility for their part in the unhelpful framing of this illness. The direct consequence has been lack of research interest which ironically Mark Baker has said is a tragedy.This ofcourse has been the vicious circle - no research , no robust single evidence for disease or...

I can assure Barts would be the last place I'd want to model good ME Drs on!! The idea would be that NICE would limit GET /CBT recommendations appropriately. The CBT model would no longer be such a basis for these clinics and that Drs fully behind the biomedical model would ge the ones running...

I will just add that I want NIVE to either remove GET/CBT or limit its That's interesting. My own CFS service locally gets nothing like this for the same treatment. They've done patient surveys and many don't improve or get worse, more fifty - fifty I think.

Dr bansals severe patients are sad for their loss I've read. Bansal going is pretty much the old wave of experts nearly gone ...

I have severe ME and there really does need to be some guidelines on it Drs can refer to and the severe do really need expert Drs to manage complex distressing symptoms in ways GPs might be reluctant eg on sleep, pain, spasms beyond the basics GPs are happy with.. I've never believed in just...

It might not have been ME related but financial.. How is it acceptable to not commission services when the NICE guidelines state that they're needed for complex cases. The severe need access to expert doctors. How is it acceptable to leave pwsevereME or complex without medical care in the way...

I guess that's what was referred to in the discussion with funders. I think they received £1-200k from a specific donor

What planet is dr shepherd on here He doesn't mention pain in his description- not me, but for many its a huge symptom He talks as if our MRC is doing loads rather than continuing a tradition of virtual neglect - WTH He says uk is making great strides on diagnosing early. Uk isn't really...

Yes fair enough. The positive is that IIME has quite a lot of money (depending to a part if they can keep their philanthropist donation too) to plough into other British research. It's not like there's not a whole range of other areas needing funding. The problem in UK I'm guessing is who there...

It's a size thing isn't it. If there's a small study originally, a larger study still funding much of the same, with some edges rubbed off is good.

SEID was only supposed to be a temporary name until we could label accurately based on evidence. Currently the states are left with CFS or CFS/ME. Much of Europe is left with CFS and uk CFS, MUS or FND. The issues with CFS was the fact it's vagueness was designed to leave it open to...

Maybe the difference is some with ME do improve or recover so theoretically tackling something like sleep or pain can help that and "perpetuating" lifestyle factors in the newly ill with chance of natural recovery if they were well managed can be boom and bust or stress. But I agree it's...

They might be iffy but I don't think the existence or not of the optimum health clinic has really had much impact on the ME field.

If anyone wants to see ME mystery controversy debate and misery from a different era here's a 1990/1991 Robert Kilroy silk discussion program with an audience and Drs shepherd, Ann mckintyre , Peter white and a neurologist. Some comments achingly familiar, even one lady pointing out CFS in uk is...

Julia Newton couldn't see why patients would have concerns at the CMRC etc. I disagreed with her in this recording, almost excusing the bps focus by saying she didn't, at that time see what else research could have done, or something similar. I see her as a middle researcher, one foot in the...

This would have been great when I was newly ill. Life saving. However now I'm severe and realiant on care from others I simply can't organise my life perfectly and PEM is very hard to avoid when the slightest things set it off. As well as activity management we need treatments to stop PEM...

I had thought this was the replication PET scan study as it was published on Facebook !! Very disappointing if it isn't. The same Japanese team are doing a large replication study of the 2014 one, I'm so disappointed this now looks like it might not be that, I've told family too :-(

Also we shouldn't be framing this as ME is a subgroup of Oxford fatigue. ME is a distinct illness, with using strict criteria, a population size equivalent to MS. It's simply not ok to keep letting it be screwed over and not recognised because the uk can't bring itself to recognise it. For ME we...

Analogy If we had a scenario where migraines were just dumped under the term headaches. Then some headache researchers took a cohirt of headache and migraine sufferers to assess paracetamol and mindfulness as treatments and 70% found benefit that could then theoretically form the basis of the...

I disagree with your position. As far as I'm aware there was concern in the USA that Oxford fatigue studies shouldn't be assumed to apply to the more complex sick ME/CFS which is why they were droppped from recommedations. Not because the USA considered the studies themselves necessarily...