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I think Ron suggested that we may have fewer viruses because our immune systems are up regulated. Please correct me if I got that wrong. I watched Dr Phair and Ron afterall, and learnt a bit about the nature of science which felt exciting. Don’t ask me to repeat it. I didn’t understand Dr...

I watched Drs Fluge and Hanson with a rest between them. Utterly loving Dr Fluge’s talk where he moved between talk of the patients and the data. Didn’t understand a lot but someone?? talked of reducing carbs with benefits. I think it may have been Dr Fluge but he was not recommending it as a...

This thread has been split from the Stanford Community Symposium 2018 thread. (Copied post) I watched Drs Fluge and Hanson with a rest between them. Utterly loving Dr Fluge’s talk where he moved between talk of the patients and the data. Didn’t understand a lot but someone?? talked of...

Hasn’t a paper been submitted, I think on red blood cells? Struggling to remember where that was said. I think- in the bio of one of the new scientists working on ME. ETA: it mat have been in the bio of Dr Mohsen Nemat- Gorgani, but this is from an unreliable memory. If a paper has been...

Thanks @Suffolkres Sounds as if Nice had not fully thought through the selection of stakeholders process. I think I remember at least a couple of other local groups being selected but am not sure if they are still there. I think the issue of getting CBT and GET removed is such a crucial...

I have a vague recollection that there was some confusion about this issue. Were there one or two local ME groups accepted and are they now still stakeholders? I really can’t remember the details. Can anyone else? The local group I belong to was not accepted. I think the process of revising...

https://valerieeliotsmith.com/2018/09/28/karina-hansen-news-a-battle-with-nice-the-uks-national-institute-for-health-and-care-excellence/#comments Valerie describes how her organisation “ Law and Health” was first accepted then turned down as a stakeholder in the Nice review process. EDIT...

I was so ill I was frightened after the last car journey. It was a long drive to Cornwall from London but we split the journey halfway at Honiton. First day seemed ok. I went straight to bed when we got there - orthostatic intolerance is severe for me, and we had a meal brought in. Same distance...

Car travel has become impossible. Was ill ( unable to sit up without severe dizziness) for 2 weeks after my last car journey and had to fly home.

Research supporting yoga in ME. Scientists- is it any good? Have just seen that Colin Barton posted this on MEA fb page yesterday evening. https://bpsmedicine.biomedcentral.com/articles/10.1186/s13030-017-0090-z ETA:first line

Split from this thread Research supporting yoga in ME. Scientists- is it any good? Have just seen that Colin Barton posted this on MEA fb page yesterday evening. https://bpsmedicine.biomedcentral.com/articles/10.1186/s13030-017-0090-z ETA:first line

The MEA’s position is incomprehensible to me. How they can ‘advertise’ the Sussex group which promotes Pace style treatments, yet work with all the groups pushing for abolition of CBT and GET, both at the same time, is inconsistent. They cannot write to the Times about Fiona Watt’s statement...

Somehow can’t resist doing these things! Mine is advocate which might be of use around here especially as it’s very rare. And I’ ve lost the capacity to follow up on one quality. That’s an interesting slant on ME.

Not that I saw. There is a thread on PR from 2011 mentioning Pariente and an interferon study, also the CDC who were funding an interferon study too. https://forums.phoenixrising.me/index.php?threads/carmine-pariantes-mrc-research-award-persistent-fatigue-induced-by-interferon-alpha.13799/...

Great letter @Graham.

Just to say this makes no sense in my own condition. ‘Excessive rest ...needing a psychiatric framework’ I was beginning to think the proxy thing might have some value but not with the above as part of the package.

My family member who took interferon as treatment for a melanoma didn’t just feel ill. He was a very active hill walker, badminton player ( international and county), long distance runner but during that year was crashed as we are crashed. He recovered some after the interferon but never to his...

I have had a family member given interferon a for melanoma. He had the treatment for a year and felt utterly dreadful the whole time. Extreme flulike symptoms, nausea, severe fatigue. @Trish I don’t know if the fatigue had a pem aspect to it. I don’t remember that being talked about so possibly...

I agree but I also I wonder how they explain it to themselves. They are after all members of the “ helping professions”. Can they even allow themselves to know that they are damaging patients? When I reattended the Sutton hospital nhs clinic 2 years ago and was offered GET by the nurse, I...

Thank you to those on this thread. @AndyPandy @Wonko @alex3619 I am not diabetic but am heading in that direction, and after reading how difficult it is for you, I shall redouble my efforts to avoid it. Just as I got my blood test results there was publicity about the soup and shake diet that...