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That’s just inaccurate from the start because whilst not yet explained it’s not a mystery. Mystery in peoples minds equates to nothing known , nothing can be found, not serious like real disease, PS factors important

One thing I think is strange AFME haven’t covered this on Facebook, they usually publish media coverage for discussion. I looked on twitter and they started a thread there but hardly anyone replied. I’m not sure why They didn’t share this wider since the CMRC is there big thing.

Great idea. I’m too severe but think this is really positive action.

I don’t necessarily think the smc needed any reason to promote the Pariante study other than it was MRC funded, a kings study and not too out of line with the current bps theory. They were included in the CMRC for years , presumably to promote research, this is possibly the only thing of much...

Well done John you were superb. Great to hear a really informed patient so the interview with Carmine pariante was much more incisive. I just wish patients could engage with the fatigue researchers more.

This post and the following have been moved from this thread: Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al Apparently the House of Commons debate was offered for this Thursday, declined for reasons...

I’m guessing the MEA won’t write much critical given It’s a CMRC members research and MRC funded.

Wow, well done , I will listen

Pariante on radio on mental versus physical wasn’t helpful. Whilst psychiatric illness might have biological underpinnings it presents primarily as issues with mood and behaviour, physical illnesses primarily present with physical symptoms. Whilst dementia might sit in both courts arthritis is...

The radio 4 continues the mystery notion. This isn’t a complete mystery with this one chink of light now from our MRC and psychiatry saviours. The patient is actually quite good thankfully, although a short Time case usually preferred by the media . I don’t really accept CP as an ME expert, ...

Yep I agree, I think there’s evidence of that with three top arthritis MRC scientists suddenly appearing in a USA patient funded collaboration study. Or in the light of an upcoming HOC debate some spin of how the MRC are funding really imprtant CFS research. If this had been a charity funded...

That’s good, thanks for your efforts. I hope it comes throughm we need a worldwide research effort like other illnesses rather than thinking one or two major US research teams can achieve it alone. Hopefully it will be a domino effect

Interesting. I also don’t get pain, so if they with DRG can move feeely and are in pain and I have only bad heaviness and weakness, can DRG be behind it....

I think it could derive from any neurological impairment, if it’s a signal thing which I think it is, along with other sensory changes as you say numbness etc. Sometimes my limbs feel like their only half there to my brain too which is differto touch sensation loss. Re DRG I think it’s a...

I have it really badly in my arms. They feel like lead. I think it’s seen in neurological illness

I’m glad it seems there’s pressure on mea to be more dynamic. I remember Meruk were asked on Facebook a few years ago if they’d join twitter, they responded heavens no we are a year getting used to Facebook. I rolled my eyes at this attitude. I think there’s been a lot of unused volunteer...

I think the obvious need to focus on severe ME, as solve did, in anything graphic, is partly why UK charities haven’t done it as they have had this long standing compartmentalism , rather than seeing pwSME at the heart of the community and the highlighter of all that’s not being done, they’ve...

Rather than lack of scientific knowledge being an embarrassment or weak society we could make it the focus, the scandal point ... Imagine being twenty five and being so poorly you have hardly left the house for five years with an illness that we have no treatment for because we have researched...

Regarding the MRC researchers magically appearing as colleagues in an American, patient funded research project. ...it’s either good that the MRC despite seeming to do nothing here (they’re funding so little research they can’t even pad out a yearly CMRC conference anymore) they are , behind the...

Id be for it, yes lack of money has been quoted in the past. I think that this is where #MEAction have the edge as they’re all about mobilising the community and volunteers rather than thinking we can’t afford to pay a company to do this This is where then name is a problem, chronic fatigue...