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This is just wrong. I have deteriorated over 35 years but this is not because of poor management or lack of goal setting or all the other rubbish terms they use. It's the nature of the illness for some of us and it should be acknowledged by MEA.

How much research money are MEA and MERUK holding? Is there enough to start SequenceME?

On Several visits to different hospitals for tests during the covid era my body temperature was 34.6 each time whilst my sister who accompanied me had a normal body temperature.

I sent the paper to a lupus researcher @QUB and she read it! Thank you very much for sending on the article and sincere apologies for the delayed reply. I thoroughly enjoyed reading the paper, it offers very interesting insights and I agree there is plenty more to be done around cellular...

@Corydora I wonder if you have had time to read this paper and whether it has given you ideas for your PhD

Ditto @Trish

HSE is Ireland not UK. Northern Ireland comes under NICE. A webinar has been arranged for GP's in Northern Ireland on ME to be given by NHS tutors in March. No idea how good it will be. @Keela Too might know.

Is it worth trying to get more publicity about MAGENTA trial results?

Is the reduced cerebral blood flow secondary to the brain being less metabolically active?

I hope that you use it to ask questions about how we use the internet for practical support. On this forum there are threads on ready meals, wheelchairs, pillows etc etc

Why would IVGHV3-30 not be elevated in severe ME/ CFS? Hypothetically speaking!

I do love those rare " ladder " days when one's body and brain feels light instead of cloaked in lead.

I think Minna was only ill for a matter of months and thought that positive thinking and lots of TLC had helped her recovery.

@JemPD @Sasha I was never asked to justify or explain my level of disability . If I had been asked I would have said something like this: are you aware that the recent NICE guidelines recognize that ME/CFS is as debilitating as congestive heart failure and strongly advised that we stay within...

@JemPD please copy it if it helps. Take in plenty of ear plugs because they get lost so easily in the bed.

@Sasha I don't think anyone I met understood orthostatic intolerance but they accepted that I needed to lie flat and my other needs and that was the important thing. Surgical staff want to get you through your operation safely and home as soon as possible, so they appreciate clear instructions...

I needed surgery in 2021 and fortunately my local hospital has single rooms in the surgical ward and I also have support from my two sisters. This is the checklist we used when talking to staff. All the information that is given to the admitting nurse is automatically transferred to the ward...

I would prefer orthostatic intolerance to be higher up the priority list because it informs how we pace ourselves, and leads into severe/ very severe cases.

What "campaign work" cost £48000?

Maybe the protocol should be published on Qeios to get it into the public domain as soon as possible.