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I'm not sure which charities have the capacity to do this.

Partners are only "laterally" involved, eg asked to "advertise" the questionnaire to members etc. They won't be involved in decision-making.

Yes, the ME PSP. The Steering Group haven't started the process of signing up partners etc yet, but the JLA Facilitator mentioned at a Seed Group Meeting that Cochrane had expressed an interest in being a partner organisation. I think they are involved in this way in a number of PSPs.

I see that your response is still there. Thank you so much for your comments on this blog. I understand that Cochrane are keen to be a partner organisation for the Priority Setting Process, so am sure that some interesting conversations will be had...

How can one part of Cochrane leave the Larun Exercise review on their site, without clear warning, when they are producing blogs "To help you question health advice" including the following!

Are there other disease/illness groups where the main clinician/researchers are so negative about peer-support groups and relevant charities?

Anyone interested in this role? Apply to be a ‘Cochrane UK Consumer Champion’ We are inviting applications from people who would like to be ‘Cochrane UK Consumer Champions’. What will the role involve? The role will be very flexible. You will be able to focus on tasks that you have a...

@Caroline Struthers

Health is devolved to scottish (and I think Welsh) parliaments. Scotland is not covered by NICE, not sure re Wales. @adambeyoncelowe @Gecko

I have been surprised by the number of people with ME, yet not necessarily POTS who find sitting with their feet up much less tiring than having them on the ground.

Other than the last sentence of the conclusion, which seems a bit odd, it does seem useful. "With the added perspective of large-scale studies, this sensor-based platform could provide a recovery path for individuals struggling with ME/CFS." I hope it means something like "this could be a...

I have a friend who is a doctor who has endometriosis. I wonder what docsnet is saying about this.

In some ways I am "fortunate" that the cause of my pain has become increasingly visible over the last 15 or so years. My structural spinal abnormality is now clearly visible, without Xrays. I have therefore been pretty well supported by the local pain clinic for 21 years. They did offer some...

I suspect that Nina M is working with Frances Williams who works with twins research at King's, and that Pariante got added due to his work on fatigue post hepatitis.

Interesting that Dr Michael Peel is a GP at the Hurley Group, which is the same Group where Gerada is based. "The picture reminds me of patients I saw in the mid 1980s with tiredness and muscle pain on the slightest exertion, but more severe. The term the patients used was ME, which became...

@PhysiosforME !!!

I've just had a coffee, might need something stronger in a bit. Is this some kind of alternate Universe?

This lady must have something organic and neurological going on to cause the dystonia in her hands and foot. Item is near the end, sorry forgot to note the time.

I wonder if modelling the Camelford incident in Cornwall would indicate hysteria as Wessely stated or poisoning of water supplies. (Aluminium salt I think iirc)

What a waste of 4 million Euros.