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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...

Action for ME have a survey on the NICE draft which they say will inform their feedback. 120 people have done it

thanks everyone. It seems I was especially weak. Perhaps that's why I succumbed as a teen , most people commenting got sick well into adult life. However playing sport and being active I think is different to the demands of a junior dr. The program I watched had a dr booked as a surgeon and...

In my view this is gross over simplification and likely wrong too. I'm surprised at this from a dr with experience of severe ME, Jessica Taylor was In burrswood a long time. Regarding two areas seriously affecting the severe 1) light sensitivity and cognitive dysfunction. From my reading there...

I agree. I was pro SEID and hounded off a group for "betraying PwME", despite being bedridden with classic ME and just wanting to shift away from the CFS mess. It was a missed opportunity that I don't understand in the uk, it's not like we are winning the ME for name battle or even trying to...

Wow that's impressive. You were sick in later life? I'm not sure if I had ADHD/anxiety so maybe for me the idea of focussing all that time seems impossible. I got ill in my teens so it's hard to say exactly as I never did the normal work thing to know my exact limits. I used to struggle with...

I was pretty active too and would have classed myself as fit , active and healthy. Except as discussed on here, endurance sport - swimming & distance running - I couldn't do or struggled with and nor do I think I could have worked as a JD , extra long busy shifts. I could however have gone for...

I was wondering if people can think back to their pre illness levels of energy. Do you think you could have regularly worked 12 hour shifts? I know there's been discussion on sport pre illness but what about daily life stamina? Watching NHS program on BBC in the uk and the junior doctors who...

Good point and the toxic message around CFS in the uk (I don't think you have this image problem In the states, obviously the SMC part engineered this) is there is little pathology in the way of barrier to Improvement, effective treatment exists, extremists have an irrational dislike of...

Regarding characterised by fatigue, this is how AFME are describing it and they also wrote the parliamentary briefing bit that also copied their description. I'm very ill and haven't been able to really grasp this whole process but am getting concerned at what NICEs objectives might be, i.e...

Re PEM in the severe , i am very severe and yes I am in often constant PEM because any life /stimulation is an exertion , however I can also, like the rest of you, get grades of PEM so if I'm exerted extraordinarily, which for me is a doctors visit or necessary moving from bed I will get even...