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I actually don’t know if I agree. I think it’s BECAUSE we aren’t making proper progress on the issues, that patients become concerned with trying to modify anything they think might get us more the respect and recognition and action we haven’t got.

I think there’s a truth in that but regarding CFS terminology I think it’s actually preventing proper respect and recognition necessary to solve the issue, so it’s not just semantics.

Totally agree Trish. Of course very useful for Crawley et al and really just a weakening to more like oxford criteria in uk to perpetuate the bps approach. Turning PEM into fatigue takes out the sickness, illness, pain aspect so central to PEM, conveniently. Saying that I do think there are...

I know some people find the term PEM belittling to the severe distress most of us actually suffer with an exacerbation. But words are tricky. The word distress I’ve just used can be misinterpreted, the alternative some prefer PENE , is less satisfactory to me because it’s about exhaustion, the...

A crash for me is a really bad flare of ME where I really go down hard as opposed to more mild PEM where I can feel worse, flukey, do less for a day or two. A crash would be a more dive down in function and a “I’m out if order” state. A relapse for me is more severe than a crash, as in its...

It hasn’t progressed as I would like. The DoH seems to think SHs strategic priorities are the way, that’s it. The strategic priorities have seemingly progressed little from when they were suggested last year. Eg Holgate wanting a uk version of IOM report hadn’t got anywhere, with CS proposing a...

Of Forward ME members, MERUK left CMRC and the 25% I don’t think would join, so idk if CoM is representing all of them.

https://www.actionforme.org.uk/uploads/images/2018/07/DRAFT_Minutes_CMRC_10.7.18.pdf I’ve not seen these or this news anywhere before so posting here. I can’t see much else in significant developments. Another BACME member is involved. Dr Louis nacul was there as an observer. Mainly a...

I don’t see why a slightly more complex criteria is unacceptable, perhaps it’s part of the issue of expecting primary care to diagnose. MS & lupus & sjogrens are quite complicated illnesses to diagnose requiring tests , as well as history etc AFAIK. I’d have thought any potentially chronic...

He’s also an Alzheimer’s champion and prostate cancer “victim “so probably has enough health “causes”

Great interview by the family. They convey things well in a very moving way and it’s amazing they are still advocating post all what’s happened and the fact that ME as a battle is no longer ( sadly) theirs. I don’t really agree with how dr Shepherd frames prognosis. For him there’s “the...

Wesley and Hawkins, wessely and jo brand, wessely and Stephen fry, wessely and prince harry, wessely Regis professor, working for government and military on mental health, ex president of psychiatrists and every title going. He’s built an impressive don’t touch wall hasn’t he for a man with...

AFAIC the jury is out onstimulants for concentration and memory, I've seen mixed remviews in the mild - still at school work - and certainly in the severe where these problems are more extreme, I don't think they're the answer at all as they prevent rest, no stimulant allows for ten minutes...

I think Jason was very principled in his actions initially when everyone feared the IOM was going to be a massive stitch up. Some maintain it still was, I think they were actually very helpful. I personally found Jason anti SEID as a position , more so than reasonable in some of his essays or...

In this discussion of criteria perhaps we need to be mindful of the now dominant in the UK NICE criteria which requires as minimum just fatigue, post exertion fatigue and one other symptom. To me that would be an umbrella selected even broader than Jason's seemingly flawed SEID study did.

My understanding of the Jason SEID study was he was using a very weak definition of PEM as you quote, whereas SEID criteria IOM I think go beyond fatigue after activity and are based on the understanding that a dr is using PEM to diagnose as we understand it, not just excessive fatigue which can...

In a cash strapped era CFS services are seen as an area they can get away with skimping on. It's been like this always. Even dr bansals service, regarded as one of the best, was saying it couldn't provide severe care due to lack of funds. It's a sham but as a patient population we aren't to date...

Isn't a part of the problem that we have few Drs/researchers involved in our field for news to travel and networking to occur and all those who don't attend the CMRC conference might well be hearing nothing, falsehood or negatives about our community. Where does a neuroscientist or immunologist...

Wow, that was a short reply. I agree with Sasha, the answer to you need to put in a lot more money isn't "we put in a little money previously". They had other centres of excellence they could have funded , that's why I don't buy the idea the issue in the states is researchers not applying. They...

I was reading about dementia research, which is really taking off for various reasons. I saw that there's been a target set for some form of disease modifying drug to be found by 2025 I think, I think that's a global target and david Cameron I think was behind world big players all rising to...