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I’m actually in the severe category and going to start using the term energy crisis. I’m not limited in energy , I have a borderline critical lack of it, if I’m exerted by a tiny thing I’m very ill, I can do and cope with virtually nothing. Whilst what CH is doing us probably useful in...

I think their success of last year was low, their aims for this next year is low also. Taking in Ayme allows them to puff up the portfolio with some support stuff for children , take that out and what of real substance is there, especially to drive change from the establishment on areas such as...

Unfortunately I think the world isn’t shockable on ME , even if people hear this it will be filed under well it’s not that serious they get better, it’s still controversial , Some think it’s not real so what do they expect. The media can compute it more if they have got past the above, which I...

The review itself might be good and needed but it was galling to see wessely able to be involved in such a thing, to great acclaim and praise , solidifying him further as untouchable in the establishment and medical profession and almost adding savior status on working on behalf of the...

I thought this was good

She’s fixed on her talking as treatment ideas then.

Carol is our Meryl Streep, a wonderful orator and advocate.

Exactly, for many this isn’t an illness you can live reasonably with. A request for significant progress over the last thirty years was not unreasonable with the devastation caused and the cock up with world health agencies in how they mismanaged the illness adding to the disability. We were...

The problem with the nih , as the thread shows is that they just practise neglect and ignore patients, they have ignored largely all the patient groups for years, the committee championing patients was disbanded, if you don’t lobby via mobilising patients and going through the normal channels...

B But your implied point is the reason for this is that uniquely to ME, sufferers with it don’t donate but rely on government, unlike other illness ditto their families, therefore the key to getting more money is convincing the community to be proactive? ... is that true. Isn’t there a whole...

Do we need to re enact the method, animal or human, to study the end result. We know that an infection seems to cause lasting changes, can’t those changes be identified anyway the usual way of contrasting healthy vs us. There’s also the many cases that are infection triggered without combined...

But other illnesss don’t have our PR issues. Cancer for eg I think funds loads of its own research because it can raise lots of money. The medical profession can’t have it both ways, label us poorly, muddle In tired people, trumpet the wonders of cbt and exercise in reversing the illness and...

If the nih and MRC approaches aren’t working something had to change. I can’t accept the well wait twenty years as little bits of research slowly unfold the picture more, we are way behind other illlneses already and something needs to be done. I’m no expert in what but I note two, albeit...

Thanks I can’t handle pressure so prefer to stay as I am, I think #MEA are excellent though and hope they can continue to grow and gain leverage :)

Does this mean retroviruses are back on the table?

I didn’t think the autoimmune stuff could come from the mea. I also am not sure dr Shepherd would have spoken like that about CF. Key things to get the public to understand about ME versus CF, range of distressing symptoms, PEM and severity weren’t highlighted enough or at all. I thought dr...

As patients obviously we aren’t kept very informed or involved and just have to wait for drops of information, it sounds like insiders already have some knowledge. I’m not really understanding what the CMRC application you talk of is, i thought initially there was going to be a request for a...

OMF /Ron Davis announced the something in the serum a couple of years ago. I think it’s a very important finding and glad researchers are trying to investigate further I’m really pleased Karl Morten is looking now for a larger grant. My fear regarding the MRC is that 1.5 years after Stephen...

Sonya doesn’t do much aside from CMRC stuff recently it seems and that’s also cooling off as there’s no conference next year and they have many other staff, so I doubt it’s that. They are still keeping a Facebook page going, and discussing it with tweets isn’t any more Work than Facebook. They...

MH category and cLassification is there for a reason. Someone turns up in A & E, knowing they have serious mental health issues, or serious physical illness is useful to determining appropriate care. I am reluctant to go onto the Leeds inpatient service in a mental health ward because I’m...