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as far I understand mea were gifted 100 hampers , which is perfectly fine to distribute and was a nice gesture from the generous person. I personally would’ve preferred them to have been keen on helping those who didn’t have support, rather than rewarding the excellent carers of those who did...

For me, this is just so far from what we need charities to be doing

More info regarding the LC test the BBC has covered today can be seen here in this long article on UK Long covid research : https://clinicaltrialsarena.com/features/long-covid-the-cause-the-consequence-the-future-of-clinical-trials/ IT Includes at the end: "Myalgic Encephalomyelitis / Chronic...

If charities cannot acknowledge that there’s been long lasting damage and disability caused by thirty years of nhs mismanagement, framing the worsenings from get as “severe relapses” and not covering the other harm at all, then they can’t represent the community, especially the harmed severely...

https://meassociation.org.uk/about-the-mea/policies-and-documents/ Edited to provide accurate source & add odd words: ME is a female-dominated illness& a lot of complaints regarding The ME association are from severely affected women who imo The MEA are detached from and unrepresentative of...

https://uk.linkedin.com/in/dr-maragaret-macdonald

I was a mm I was a member then and would never have donated as I did, knowing her views. Which Imo are incompatible. I note this lady went on , from a Google search , to be now working for a psychological based org. Did she have m.e.? I don't think anyine who has it , bar a small % , thinks...

I’m glad they’ve had a great year

Without fatigue or post-exertional malaise, if you feel willing to share, why would you say you have “mecfs”? Are you saying that it’s more exhaustion, weakness, inability to perform rather than “tiredness” or you don’t have this type of issue at all?

Practically everyone I’ve heard of from my generation, sick several decades, were told to either push on; do graded exercise therapy; avoid support groups or that their illness was psychological or some vague malady that was not properly managed. This isn’t ill luck , thousands would not be in...

Merged thread I agree The ME association prints lots of questionable stuff but... Where is the evidence that these seizures are not or should not be see as part of severe m.e.? I've seen several people in severe ME spaces Report them, it may be that the drs who look after such patients in the...

The ME association has membership of around 2% of the affected population vs Parkinson's and MS charities that have membership that amounts to 1/3- 1/2 of those affected, yet their attitudes, actions and representation affects us all. Acting as if they have only to serve the needs and views of...

It would be interesting to know what other research The ME association has felt “needs doing” so as to approach researchers directly, over the past twenty years :

Jo platt statement re. Long covid appg. My main concern in having an ex long COVID sufferer run both, is having ME/CFS and long covid needs & struggles overly blended, when LC is “new” early stage, far better supported preventing the decades of suffering and disability that is the m.e scandal...

Haven't The ME association got what they wanted, a focus now on the allegations regarding money and framing this as the nasty subgroup making an unfair smear against them , which afaik was a relative side issue, if a main concern for a few?. The other issues were regarding their statement around...

This, like the WASPI women announcement left until the very end of the year. Neither charity has posted anything yet

There’s a choir called voces8 who have albums with some very soothing pieces eg the seals lullaby. I find human voice like that or Enya good.

I hadn't realised Chronic Fatigue syndrome had been established in the UK by that date. I went to my dr asking if I had m.e in 1994, after being fobbed off years and this was the term we used, not Chronic Fatigue syndrome. Already it's clear that if you make m.e a Chronic Fatigue syndrome...

Nath seems openly still only interested in early intervention/ prevention and seems to be happy, as probably lbh many are if unchallenged, to just write the damaged, long term with ME/CFS off , ie reducing ME/CFS research funding, despite saying ME/CFS has a damage that’ll be harder to treat.

Not exactly m.e is defined by post exertional malaise and As physical as a broken leg is it.