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Should we be writing to scientists directly to inform them of ME/CFS as a worthy, interesting area they might like to consider. Isn't a problem the illness for various reasons just isn't on people's radar, is misunderstood and not respected. We could target certain people and specialisms eg the...

I think it is good AFME are seeking patient feedback. The issue I have as expressed here is the fact that they often don't do a great job at informing in much detail prior to this and seem reluctant to take controversial positions themselves. #MEAction are seeking feedback too. I want a...

It's less about cause than about establishing our abnormal PEM weakness on exertion, through 2 day testing. The research contrasting us with MS has been interesting, larger studies establishing the abnormal response which IOM considered very important hence SEID and then, for uk benefits...

I'm not remotely capable of doing this, but if it's so widely available and not hugely expensive it's sad no one in the uk has had the interest or been persuaded to undertake a study. At £300/pp , 50 tests would cost £15 000, then the scientific analysis paper writing costs. Could those who're...

Interesting idea, the others could Stay the same.

The prognosis section suggests most people are just rising up to the surface - to remain mild - but not fully making recovery. Is this borne out by any evidence? Mild is perhaps a term that needs ditching when grade one level ME often means no exerting physical activity, no late nights, vastly...

But AFMEs stance carries weight, it justified PACE, it can justify a weak modification of the status quo.

It is a shame people can't just try melatonin rather than research funds having to prove it but aren't MEA funding a study? I think it's a shame CMRC conference haven't invited or procured the workwell type scientists. Whether that's political but people don't get interested in what they don't...

I'd like the American CPET exercise testing done on a sizeable level to get that abnormality established as fact so it's recognised, especially in uk and countries heavily pro GET. Comparing us with MS , heart disease and depression and also with CF without PEM might help to make the picture...

Yes you're right

Thanks for sharing all your in depth knowledge , whilst initially I was down I actually think on reflection it's pretty good news to have such a respected dr involved with NHS care.

Thanks for that info. Whilst nothing is licensed for MEwe can struggle to get appropriate pain sleep and so on meds from GPs. One GP refused to up my sleep med saying I needed to get more active instead, I'm on melatonin via a consultant which I know a lot of GPs won't use and a former...

I thought Chias findings were through biopsy and no one else has done it to confirm or disprove. I thought doing biopsy in CFS wasn't typical which is why dr shepherd struggled to get his muscle biopsy results from years ago replicated. I still don't know if they've been.

TBH I think there is as AFME have the stance of ME=CFS, don't commit to any criteria or discuss these issues and we know that Drs are diagnosing broadly and Misdiagnosing too. NICE guidelines are requiring fatigue, PEF and sleep issues to be called ME. The Suffolk service discussed elsewhere...

Is that the case in MS etc? I doubt it. If it is the system it's a stupid system but the NHS is pretty awful in illness management (rather than acute care) IMO

One concern is the evident fuzziness in uk regarding name, definition, criteria etc. So someone with predominantly unexplained fatigue might be given a CFS medical diagnosis, join AFME, think "defined by fatigue" as NICE says is just fine and vote for weak definition and Continuing of behaviour...

Worth reading the 2016 service assessment & feasibility study dr nacul was commissioned to do mentioned above. I've read a 1/4 so far. Maintaining a cost neutral service but with improvements seems to be the pressure. I don't know if simply cost, rather than any other BPS /NICE conforming is...

I thought people on here might be more informed than the average sufferer and therefore their responses would affect what "might" otherwise be unwitting establishment supporting stuff which will be cited as patient opinion and form the basis of the charity stance. Unfortunately I'm too ill to...

In addition, East Coast Community Health (ECCH), who deliver the current service have been, throughout the service development process, reluctant to embrace change to improve outcomes for patients. Annual patient surveys by ECCH have demonstrated year on year worsening outcomes following contact...

The service is for people who are assessed by their GP to have made limited improvement having been referred and treated by the ME & CFS service provided by East Coast Community Healthcare. Dr Nacul is experienced in public health and general practice and is a Clinical Associate Professor in...