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Last time I applied for PIP I found out that our local Citizens advice Bureau had a specialist advisor to help. She came to my home and asked me all the questions on the form and filled it in for me. I had prepared in advance by reading the form and Benefits and Work guide, and made some notes...

Go to this thread for discussion of the newsletter updates

Some posts have been moved to a thread about Upper Airway Resistance Syndrome (UARS) and a PEM discussion thread.

I think one of our biggest problems is the lack of an appropriate medical specialism taking ownership of ME/CFS (and Long Covid triggered ME/CFS). We seem to have moved over the last few years from the psychosomatic wing of psychiatry to rehabilitation medicine, with a branch off into the FND...

Some posts have been moved to a new thread: What advocacy use should be made of DecodeME results?

We have a public thread in the Fundraising forum: Donate to build on the work of DecodeME

Thanks for the update, @Mike Harley. I really appreciate your efforts.

I have only read the abstract. I wonder whether the authors ever reflect on the 'comorbid psychosocial trauma' being at least in part the fault of themselves and their colleagues for attributing physical pain to psychosomatic causes and refusing to treat with adequate investigation and drugs.

Yes, that's clear. It's a mix of rehab specialists and occupational health specialists, which matches the content and purpose of the app and its funding. It's a mix of rehab stuff and stuff about employment and getting people back to work etc. Funded by DHSC and DWP, app name open-OH with our...

Hand grip: Control: Hand grip strength was diminished by a median of 4.65 kg after one hour. Pyridostigmine: In contrast, one hour after pyridostigmine administration, patients showed an improvement in maximum hand grip strength with a median increase of 2.6 kg. Comparison between control and...

I had the same reaction. Are they really suggesting such a high percent of controls have ME/CFS?

The results in the abstract suggest it is controlled, ie tested and results given with and without the drug.

While interesting, I'm not sure what the point of this is. If my hand grip strength improved and my increase in heart rate on standing became slightly less, would I be any better off? I'm really only interested if these two improvements are accompanied by improved overall functional capacity...

I don't think that's true. They both involve trying to get pwME to believe they are not really ill, but LP takes it to extremes, with the use of brainwashing techniques, secrecy, and cult like pyramid selling scheme to hook people into the cult.

Or perhaps they are so stuck in their mindset they simply have no idea how wrong they are and how worse than useless their so called research really is.

I'm afraid my cynical view of most MP's who join APPG's is that they do so to get votes at the next election by appearing to be useful on behalf of constituents. APPGs have zero power and usually zero influence.

I think that's partly why NICE ME/CFS 2021 specifically recommends against LP. https://www.nice.org.uk/guidance/ng206/chapter/Rationale-and-impact#lightning-process-2

We have multiple threads in this subforum for discussing whether we found wearables useful. Monitoring and pacing Some of us find them useful, some don't. I think researching their use is valid and potentially useful, particularly for new patients still getting the hang of listening to body...

I had the shingles vaccine at 70. I wasn't offered it before that.

I don't understand how this threory explains delayed PEM. Also, you say pwME don't experience being unable to continue and activity, just a rise in symptoms. That's not my experience, even when mild I couldn't do vigorous physical activity such as running, my legs would give way. And how does it...