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My diastolic has been high for years.

:rofl: “Similar to …….Lance Armstrong’s streak in the Tour de France was aided by doping”

Excellent point. Treating adults like they are toddlers or pet dogs - that never really clicked with me before.

A useful short exchange making some of these points on the twitter thread

Wired unable to sleep insomnia with burning pain the night immediately following the exertion is the first stage of pem in my experience. Today I finally slept at 9am until 1pm. Woke up feeling equally bad just not wired.

That looks very similar to the mini mental state exam MMSE they used to do with my parent with dementia early on when still able to respond 20 years on I can still remember whst year is it what season is it What city are we in Who is the prime minister draw a pentagon The one with the clock...

We are forced to make judgments all the time about the cost and benefit of every activity. I understand that’s the situation I’m in and I do my best to work round it. I don’t accept it in the sense of embracing it but I understand that accepting it as reality is easier for me physically and...

Maybe it would be worth contacting Ron Davis team as they had a list of drugs they were considering at some point.

I go between not able to eat anything in mornings due to nauseous rough achy horrible morning feeling eventually ok and a normal brunch portion to not feeling properly full unless I have second servings of evening meal. Seems like it could well be messed up grelin and leptin but I haven’t tried...

Positive to see AFME and ME Research UK working closely on funding research in addition to joint advocacy through Forward ME.

:thumbup: Well done

We’re all on here many if not the majority not using our own names…….. just saying

There’s also the risks around taking tricyclics in combination with SSRIs. Which certainly weren’t mentioned to me when tricyclics were prescribed. I have had two chronically ill relatives who were also on amitryptiline and fluoxetine at the same time. Even the NHS website mentions this as an...

Yes it seems tricyclics are one of those things they throw at the wall to see if they stick

Good spot @Art Vandelay i know a lot of people get benefits for depression from SSRIs. but I seriously question whether there are benefits from tricyclics (other than being sedative (ugh) ) as a response to ME in general practice

Prof Hazel Dockrell https://www.lshtm.ac.uk/aboutus/people/dockrell.hazel Final sentence mentions ME/CFS

A link for Prof David Price https://www.uk-cic.org/researcher/professor-david-price involved in HIV and COVID research

Here’s a link for Prof Ian Bruce https://www.research.manchester.ac.uk/portal/ian.bruce.html director of NIHR Biomedical Research Centre (as well as other responsibilities)

Disabled identity to me is perceived by these people as part of ‘Secondary gain’ - we can get all sorts of ‘preferential treatment’ due to being disabled Disabled parking, motability cars, disability social security benefits, ill health retirement, reasonable adjustments at work all the stuff...

Do you know if you snore? I think I probably do but when I’ve stayed in other peoples houses they say they haven’t heard snoring. I wondered about trying to record on my phone. I wake up every few nights with a dry mouth as if it’s been open. Also I’m overweight. So perhaps they would...