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Regular laryngitis over 3/4 years was the thing that seemed to mark the noticeable ( in retrospect) start of my gradual onset ME But laryngitis can be caused by a range of common viruses including rhino, adeno, corona, flu and so on. On one occasion gp thought I had mumps again but the test...

@Simbindi yes and as someone who worked on web content on Gov.UK for a large civil service department I can confirm that we were very focused on clear English for all content whether the audience was the general public or specialists.

I have “met” people with ME and FM on Facebook who have FND diagnosis. One said the Dr at the hospital told them FND was an umbrella term for all the conditions including FM. I didn’t feel I knew enough about the subject to engage in discussion about FND with someone in that situation so I didn’t.

Yes they are a company that produces Computer Based Training on a very wide range of topics so their expertise is taking content they are generally given by a client and turning it into a training package staff can work through by themselves anywhere. It would be interesting to know if they...

Reference to David Lloyd at the end presumably the location for the yoga classes. couldn’t see any reference to MEA so I don’t think they are involved especially when some of the content is incorrect rather shocking to hear the husband say I thought ME was very like MS, physical but no it...

A GP more or less said to me about 5 years ago when I commented that it was my diastolic that’s consistently high that they only focus on systolic

Absolutely @Robert 1973. Simpler - plain - English is not something separate for a dumbed down version of the content for the clever people it is a standard anyone responsible for any content should aim for.

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...