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Published this morning: CHRONIC FATIGUE Sir, Further to your report “Call for review of ‘flawed’ ME research”(Aug 21), as funders of the Pace trial we reject the view that the scientific evidence provided by the trial for using cognitive behavioural theory and managed exercise in the...

Thanks, Barry. We've had an exchange of submissions and responses and there's nothing now until the hearing. I am preparing things at the moment and if I need help, I'll ask. Appreciate the offer.

A further thought on this, David. As some know, the Tribunal hearing for my appeal for more trial data is on 13th November. I have been briefing Tom Whipple on it and he has shown interest. I suspect he may run something on the Tribunal decision when it eventually comes. That may be a good time...

OK, Dave, I'll do what I can. Some good ideas from others about to ask patients to contact their MPs. I think if they do, including the Whipple article (or a link to it) may help. As for a letter to The Times, as a daily reader I know they do regularly print letter with a mass of signatories...

I think that's a good idea. Also @dave30th if you want more MPs to sign the letter, I'd be happy to try. They're normally very keen to sign things (eg Early Day Motions) as it's an easy way for them to do some virtue-signalling to their constituents. I'm pretty sure the one I was in contact with...

I'm with @Jonathan Edwards on this. I also think it's unhelpful to lump ME together with other illnesses. It reeks too much of MUS to me. I don't have comorbidities. I have sympathy for those patients who do and hope they get the help they need for them. I also have sympathy for patients who...

Thanks, Andy.

I asked the same questions to the MRC. They responded today saying they have now updated their website with that information. It's available here https://mrc.ukri.org/funding/science-areas/population-systems-medicine/our-science-and-contacts-psmb/cfsme/ Under 'MRC-funded research projects'...

1. There may be. I suppose PubMed may be a good place to start. 2. Oops, yes, that was a typo in my request in fact. Oh well, they understood.

Good idea. Here is the question: To ask the Secretary of State for Health and Social Care, how much funding from the public purse he plans to allocate to biomedical research into Myalgic Encephalomyelitis in the current financial year...

I thought it would be interesting to see which studies were included in the spending on ME in Dinenage's reply to Carol Monaghan's written question. I asked: The Answer states the NIH funding by the Biomedical Research Centres and Units was as follows: 2014-15 280,442; 2015-16 295,626; 2016-17...

I have today received the decision notice rejecting my appeal to the ICO for the release of the data. I shall be appealing to the FTT. For obvious reasons, I don't want to say too much but two things stand out to me: First, the decision says information for school attendance, fatigue and...

If I may make another suggestion: the poll should not pit one idea against another but should offer members the chance to support more than one idea. Perhaps the question could be more along the lines of 'Do you think this is a good suggestion?' and then a follow-up of 'Should this be be High...

Thanks, Andy, I thought it likely that something similar had been done before, though I didn't see one in a quick search. I think it would be good if there could be some sort of briefing done for Ponting. I also think it would be worth splitting any survey/poll in two, as responses seem to fit...

It's interesting what you say, Barry. My experience has been that URT viruses (of which GF is one of course) have been the worst culprits. There is a long history suggesting some sort of connection between GF and ME. I also think that when I was growing up and was told someone had 'chronic GF'...

This is what I find so frustrating. White, Wessely, Chalder, Crawley, etc all take the illness seriously and have found ways to help some people manage the effects of their symptoms. That is not negligible. If only only they'd stopped there then they would have done some good. They have always...

I would really like to keep this thread to proposed research if possible.

OK, so what research do you want to see?

My own suggestion: Current research seems to focus on finding a biomarker: looking at what is going wrong with ME patients and then hoping this will explain the process and in time a way of fixing things Even the best modern techniques do not reveal everything that happens in the body. As...

This may be done elsewhere on the site, but I thought it would be interesting to see what research patients would like to see. Perhaps if there is enough then we could do some sort of briefing paper with ideas for Chris Ponting.