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Excellent, I too hope Jen or whoever goes can cut through the inevitable self justifying film flam that will be expressed. I begin emails listing what is being done and showing how it isn’t enough, unfortunately in email situation its still the case they just reply with what they’re doing which...

That’s a third of ambulant patients who’d consent to a Kings referreal? I assume he never ventured out if the clinic. And the rest is explained by Oxford criteria I guess. He simply doesn’t seem to care about the rest, including the third they can’t do much for.

That’s probably why he did psychiatry. Did you see this bit Psychiatry attracts 'a certain type', he says. "They tend to be a bit older - I always tell people psychiatry is medicine for grown-ups. I did the running around, 'Quick nurse, give me the needle', and all that stuff, up in Newcastle...

Heaven forbid interruption of his career when he’s shat on our lives. Then he rewrites his gulf war story. Do any ME groups have connections with GWS groups because it still seems an unrecognized area in UK and I can’t imagine former soldiers being thrilled with insinuations of group think...

I think wessely wanted to make a mark rather than necessarily help people. Thats probably why the blank page of the CFS problem was attractive. Those two questions are very revealing as to how much the UK medical establishment has really changed. The MRC article was a welcome reveal of their...

It sounded like he was still running his CFS clinic. It’s a pity he’s so little interested outside his own field to actually attend one of the UK CFS research conferences isn’t it? He’d be then up to date with the emerging science, including neuroscience you’d think he’d have interest in.

He seems to me to have some huge chip going on. I think he’s an egotistical man who dislikes not being esteemed as much as his colleagues in neurology or surgery who always seem the butt of his little side comments. I think he SAID he welcomed jokes about psychiatrists but not his patients, I’m...

Never one to miss an opportunity to spin in his own interests, our simon, each considered response chosen to reflect best for him, a bit of veiled remorse “I’d be the first to say we weren’t perfect but” and plenty of disservice to us, the patients he doesn’t seem to give a hoot about by not...

I actually think the letter is typically inoffensive and non boat rocking. It might achieve what they wanted to get out there but ... It kindly allows Fiona to be confusing rather than conveniently conflating ideas of hostility and legitimate criticism. maybe that’s fair enough. It says in...

I think that’s why we need #MEAction. The main charities, especially AFME are built on the model of working with the establishment. AFME devotes a lot of time to Scotland but is often talking about working with the government, with the MRC and the collaboration etc. But you can’t collaborate...

One thing un said is, for all his obvious faults with PACE, sir Peter spencer in 2011 did ask the MRC to continue ring fenced funding until the field was established. He said the amount put in so far was tiny compare to need. They refused and since then, including under Sonya, that hasn’t been...

Superficially it’s welcome, at this time it removes an unhelpful leg of support from underneath the establishment, trying to maintain status quo. However as above, quoting the BACME , staunch promoters of GET, CBT and PACE trial I think, undermines it a bit. I would say over this time MRC...

Good old ed Sykes. I’m so glad he sat on the CMRC board and changed his views zero and helped us so much. Michael sharpe retweeted and liked it.

“The MRC has undertaken and is actively engaged in a number of strategic activities to promote and encourage research into the causes of this condition and effective treatments, and to support the research community.” If I can list those that I know: 1) issuing some kind of ineffective...

From the MRC website: https://mrc.ukri.org/news/browse/criticism-of-the-pace-trial/?utm_medium=email&utm_source=govdelivery Text of full response from Fiona Watt ‘Call for review of ‘flawed’ ME research’opens in new window (The Times, 21 August 2018) discusses claims that the scientific...

MRC now have lengthier response on their website. Below for link. My response is this: Well regurgitated, lengthy BS doesn’t make it any better. As boris johnson said eloquently “you can’t polish a ****”. I think we are all getting very weary of the establishment defences, refusal to engage with...

It isn’t to me surprising we are seeing this line from the MRC, after all we haven’t seen criticism of PACE from Stephen Holgate, in fact he brought Peter white and Esther crawley on board, people saying he had no choice, why? They all wrote a letter defending Simon wesselys work in the past...

Given we are currently waiting on news regarding a move from the MRC on CFS biomedical research I wonder If this suggests anything. Does the fact that Chris pointing is politely asking the MRC via tweet to look at the modern research opportunities for CFS suggest we aren’t going to have a nice...

If that’s the case then complaints are warranted because changing the narrative that ME is CF is one of our key aims as we struggle for proper recognition and the media have got to take responsibility too. I’m trying to think of a comparable example, I can only think if there was a high level...

Wow, so not only does she do the ultimate insult, reduce it to chronic fatigue, thanks and how helpful, she turns this again into scaring off CFS researchers, except its actually doctors and researchers this time not patients. The MRC suck when it comes to this illness, how about putting in...