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Very interesting. This type of info always gives me hope that soon "they" will get around to doing more objective, scientifically validated and helpful biomedical tests on ME/CFS patients to finally get to grips with the variety of biomedical issues we have. Thanks for posting. My hope muscles...

:thumbup:I will be letting my MP know about this via his senior adviser. . Plus I will be giving the briefing notes too. Then keep my fingers crossed

This video is really amazing and very exciting to me. Thank you so much Trish for getting this wonderful work out there:)

I too had dizziness/vertigo and which was given label "Labyrinthitis" years ago? I'm desperate enough to have a look?!

What I don't understand is why Wessley has not been brought in front of the Science and Tech "Research Integrity" enquiry to explain his support of the PACE trial? When I asked this face to face with my MP, he was very uncomfortable? I asked something about surely Wessley's judgement has to...

Thank you so much to David Tuller and all those involved in making this very succinct video.:thumbup::trophy@ As always you all keep my hope alive.:hug: I think I might forward it to my MP plus his senior advisor and hope that they might begin to realise some of the huge problems with the PACE...

Looks very promising but I could only get to see 49 seconds of this on YouTube? Was there more? I thought there had already been a Westminster Hall debate? Does anybody know if there will be a full debate in The House of Commons? Or has anybody got any ideas about what we can do to encourage...

I found kefir made me feel worse. I'm such an idiot and gullible and am daft enough to give most things a try. However I'm finally getting to the place where I am going to be a bit more discerning and improve my self care Well that's my current working hypothesis? Does anybody know whether...

So does that mean there is the possibility that ME patients could be tested in the same way that baby's heal prick test is done? Hopefully that would mean that all ME patients including bed bound patients could be screened?

Yes my MP is one of these. I've forwarded the MEA link from 24th Aug since I felt it gave a good summary and labelled it something like Increased International awareness of of inappropriate medical care of ME/CFS patients. I sent it to his senior adviser since I never usually get much of a...

That was a really helpful and clear description. Brilliant. Thank you Simon. So million dollar question.......will Chris Ponting be trying to replicate Ron Davis's work? Using the ME Biobank samples perhaps? I so much hope so.

I had been hopeful that this line of work might have lead to some non-invasive and objective measures of some PWME issues. Ho Hum. There always seems to be that little shrug by the medical profession of "Why bother testing when there is nothing we can give you to help":banghead: We'll all keep...

A few weeks ago I tried to contact Dr Claire Hutchinson at Leicester but she is no longer listed. So I tried contacting the office to ask for my e-mail to be forwarded on to her but I have heard nothing yet?

That sounds just brilliant. Long may it continue:thumbup: Also thank you for posting.:)

I understand that the US has funded various studies at LSHTM with Prof Nacul and Cliffe over quite a few years now. They have got another dollop which is such great news. :thumbup: Why don't our government/ funding organisations add to this so that well defined cohorts and cross nation...

Brilliant.:thumbup: When I'm not distracted by THE Westminster Hall debate (which I feel I can watch having read the thread on S4ME = brilliant too) I will certainly have a look at this. Thank you for pointing me in the right direction.:)

In my brain fogged and amateurish way I thought that the "lost" data bit referred to researchers wanting the objective measures data for reanalysis. What happened to those results? Please point me to the right place if I've missed this.

I had a face to face conversation with them earlier in the year to try to raise their awareness about my experiences over the years from NHS and DWP. Unfortunately I've heard today that neither are available to attend. :banghead:

I've contacted my MPs parliamentary secretary to ask if he's going and copied in CM's piece from Politics Today. Plus contacted his senior advisor with the above plus estimate of how many constituents could be affected and the economic cost to UK annually. Fingers crossed.

Reply from Prof Walport re questions raised by Carol Monoghan about the lost data of PACE trial......whooopee it's NOT lost. Does anyone know if any who are interested in this issue have been able to access the data they need? This was dated 8th May 2018 and I hope I'm not wasting anyone's...