Search results

Thanks. You’re not confusing #MEAction with AfME by any chance? I’ve recently joined the former as a volunteer and would encourage others to consider joining too. I believe they/we are currently looking for someone to lead the organisation of the UK millionsmissing events. @Tom Kindlon...

Thanks, Barry. I found that making an appointment to see my MP was far more effective than writing. I think seeing me in my wheelchair, in a lot of pain and distress, being pushed by my septuagenarian mother had a significant impact. Alternatively, if you’re not well enough to get to the clinic...

Here is my analysis of the response from Caroline Dinenage MP, Minster of State for Care, during the Westminster Hall Debate on PACE and its effects on people with ME: https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/...

@Jonathan Edwards Would you consider contacting Gary to offer to speak on the show?

Agree with all the comments here. Carol Monaghan has done amazingly well. Hope she can get some more TV/radio coverage. Agree that it was hugely significant that no MPs intervened in defence of PACE. One small disappointment was the lack of emphasis on the need for massive investment in...

Continuing the feline theme, may I suggest Simon ‘Macavity’ Wessely and Esther ‘Puss-in-Boots’ Crawley?

All the information about Dr Myhill’s complaint, including a template letter for patients to send to the GMC, is available here: http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors #MEAction is now publicising the complaint and encouraging patients to consider writing...

That would be great. Please email asongforMEcfs [at] gmail [dot] com and I will sent you the audio link etc. So far I’ve got 5 volunteers, all women, but no recordings yet. Would be great to get some men’s voices. @Graham Could you persuade any of your singers/contacts to join in? Anna and...

Or girl!

One of the things that troubles me is the lack of advocacy on behalf of patients by doctors, and particularly GPs. I have been seen by a number of GPs since I was diagnosed in 1992. None of them has been able to do anything substantial to improve my condition. Some have made my life more...

Full letter (very long) and template for patients to submit their own complaints can be found here: https://t.co/YPXTiR7Vsc Dear Sir Terence ‘THE PACE STUDY AUTHORS COMPLAINT’ COMPLAINT RE AUTHORS OF PACE STUDY [Reference 1] I am referring such authors of the PACE TRIAL [Reference 1 below]...

Thank you for all the kind comments. I’m not used to sharing my music – it’s only the second song I’ve written, and I hardly every play in front of anyone because of my health – so it’s good to know that I’m not wasting my time. Hopefully there will be more to come. @MErmaid Please do post...

As some of you may have seen on Twitter, I recently wrote a song about a friend of mine who has ME: Please share if you like it. YouTube description: I met Alex in hospital in 1999, in a neurology ward for patients diagnosed with Myalgic Encephalomyelitis (also known as ME/CFS). We were...

This is the exact quote from the above 1989 discussion paper: There are some other remarkable statements in this paper. In the section titled “Sickness Benefits” Simon Wessely et al write: In other words, this paper seems to be saying that ME patients should be subjected to treatments...

Simon Wessely claims that his views are misrepresented and that once again he is the victim of a terrible misunderstanding. He is the former President of the RCP and current President of the RSM. He has the highest profile of any MECFS researcher/clinician in the world. He is the recipient of...

Do you think this 2012 letter to the Independent, signed by the chair and vice-chair of the CMRC, as well as most of the usual suspects, would count as a “coordinated attack” on those who disagree with Simon Wessely’s views (ie ME patients)...

Love the use of the word mega. It’s like she was trying to think of words to describe a completely shambolic research project and somehow MEGA just popped into her mind! Yes, SMILE combines placebo with all the mess and muddled thinking that is associated with the CMRC’s MEGA shambles. But...

I find it hard to believe that doctors like Alastair Miller are stupid, but there is so much that is wrong with this letter that it makes me question whether he is intellectually incapable of understanding the issues or whether he is simply dishonest, or both. Almost every sentence could be...

Good letter. Just a couple of minor points: I would re-write the above sentence to make it easier to read. Something like: “Not only did it seem unusual for NICE to state that, in its view, the results confirmed its recommendations as appropriate, but the speed at which the statement followed...