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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...

For me the IBS segment is unhelpful. It's always riled me right from the days Wessely decided IBS & CFS could be dumped as facets of the same functional syndrome. Continued by the likes of moss Morris who often put CFS and IBS in the same paragraph, the same category, with the same behavioural...

Looks like miss Rachel french has expertise in Gastroenterology, probably a surgeon, I am surprised she has expertise in FM & ME Professor Frances Williams Campus Dean St Thomas' Professor of Genomic Epidemiology Start date at Kings: 1/10/2007 Department Twin Research & Genetic Epidemiology...

Hmmm. Compared to my response to the iime one, still looks like lots of spaces filled with stuff outside ME & CFS biomedical research. And psychiatrist carmine pariante has two slots one on inflammation connecting brain and body, his specialism is in inflammation in depression and stress I...

It is simply awesome news, it looks like a study that seeks to answer a lot of big questions and the money is coming from the NIH immediately , rather than us trying to slowly crowdfund for this as well as lots of other things as used to happen.

Great news for IOM and us More here https://www.healthrising.org/blog/2018/06/25/davis-nih-grant-chronic-fatigue-syndrome/ Not sure if Corts funding figures are accurate Edit IOM are announcing it as multi-million dollar funding, so suggests yearly figures?

It is a shame that the well articulated pace criticisms weren't printed, but I'm not sure if thats more BBC unwilling to Print something controversial against the establishment line than not knowing the material. Ultimately at the top there seems no one who Can take on PACE except NICE. I...

Reasonable NHS diminishes the illness in Its description The reason why PACE is criticised by Carol was sadly missed out , it goes beyond just contradicting the outside patient experience. The trial was a fix, Michael can still spin ideas that GET isn't being done correctly outside his trials...

I think it depends what's found eg Newton is already in a minor way, trialing a diabetes drug that seems to help with some of the energy in the cell. Davies thinks the metabolomic issues might be treatable if they can get more info. If the Japanese PET scan is positive for inflammation we might...

I Apologise for sounding totally negative in my responses it's just this positive , vague spin, perhaps it's genuine for newbie prof Chris who has a , conveniently for the MRC, recent starting point in all this - without recognition of what has been our reality of suffering and their...

The question implies patients dissatisfaction comes from patients misunderstanding, I don't think that at all. However the CMRC define themselves, they've been naive, ineffective, weak and are ony now calling for more money to be put in, only now working more on biomedical research and Breaking...