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I am looking. I have found another reference which is not quite the same. This one is from "Time for a Reality Check at the UK Department of Health?" by Margaret Williams : The ME Sufferers’ Bill was presented to the House of Commons by Jimmy Hood MP on 23rd February 1988 and passed its first...

Wherever I read about this I had seen the following: The ME Sufferers Bill was presented to the House of Commons by Jimmy Hood MP on 23rd February 1988 and passed its first reading unopposed. The second reading was on 15th April 1988 and the Bill was ordered to be brought in and to be printed...

Any letters to MPs asking specific questions about ME I think would get forwarded to Jeremy Hunt. MPs seem to send questions on to whoever is in charge of that department. SO to get Jeremy Hunt inundated just send questions to your MP. I asked mine why despite there being an ME sufferers Bill...

the other lady was very good at wooly talking to fill time

good start to the week :)

set your email preferences so that anything from them goes straight into junk folder

maybe i didnt then and brain put 2 and 2 together and got 8!

I think I read Jeremy Hunt is supposed to be there. It will be interesting to see what he has to say. I had written to my MP recently about a few ME issues and she had forwarded them to Mr Hunt. He sidestepped the questions so I wrote again the other week, and my questions were sent to him again...

it starts just after 36 min in

I love Dr Tullers articles - they really make me hope that as a community we are still chipping away and getting results. It's like a giant strategy game - maybe we should nickname it The Game of Crone(ie)s :) Things that jump out from this one: " It mainly cited exemption provisions of the...

I forgot - ice pack is the best at getting rid of pain. Horrible as its cold and that hurts but it really does take the pain away and reduce inflammation.

use a "Shoulders back" - you can buy one but it's easy to fashion your own from a wide crepe bandage. Also called posture supports. I find the ones available cut into your shoulders though so I prefer the homemade version. If you sew two lengths together then it is much wider and goes round...

It's nice to have some non ill people around as well so they can remember all of the stuff we have forgotten :)

What about Pilates or Yoga. Pilates helps with core muscles and posture and I don't think is very aerobically taxing. Even things like sitting on an exercise ball instead of a chair will help massively in improving core muscles. And you don't have to do any of these things for long. If you...

Spend 5 million on a study then someone leaves so therefore the data cannot be accessed any more. And this at a time when it is under scrutiny. I would say it's another thing for Carol Monaghan's notes to bring up with the MPs!

Would it be worth sending her the Dr Myhill stuff as although it's a bit ranty it does point out the legal challenges to the trial - also individuals have written letters to the GMC about how PACE, GET and CBT have affected them - so those letters would be equally relevant here.

Back in 1988 there was an ME sufferers bill passed in parliament. One thing it said was that each year the department of health had to produce a report to parliament on ME. I have not been able to find any of these so had written to my MP about this. It was overlooked in her response to me so I...

thanks for the comments and I completely understand what everyone is saying. My consultant has said I am permanently disabled, have undergone all treatments and am unlikely to recover. However insurance company have decided to ignore this and got an opinion from their CMO who turns out is a...

Does anyone know where to get a cpet 2 day test done in the UK? If it can be used to prove disability then it may be worth the relapse to then not have to fight for benefits with all the stress and fatigue that brings.

Or are they saying that they do see a problem but they see it with the conclusions/results - in that the numbers reported were hugely inflated.