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One challenge for the strategy of convalescing is that with gradual onset there’s not an obvious starting point. I didn’t have one very debilitating viral illness at the time I started being generally unwell it was more increasing frequency of routine viral infections laryngitis, flu type...

Oh gosh flashbacks to being 9 or 10 and having a rather large rather persistent verruca on the ball of my foot. I had weekly visits to a foot clinic to have treatment with a rather copious amount of salycillic or whatever it’s called and hobbling round with a big dressing on. that seemed to...

And in the fine print they are saying they don’t work or they do something home based. They travel but have long rest breaks. Etc etc Ie not recovered back to pre illness level.

Sounds like it could be a lot of work.

I think the fifth point by @Hubris is very significant, if someone has no family to support them or whatever family they have are unsupportive they have the enormous burden of having to be your own advocate. Dealing with the bureaucracy of trying to get and retain benefits, social care...

Stating the obvious this is why the official guidelines matter, if this was here it could be challenged as not compliant with NICE.

Thread on the paper referred to https://www.s4me.info/threads/the-relationship-between-physical-activity-and-long-covid-a-cross-sectional-study-2022-wright-et-al.26779/

Just picked up on this no wonder he was spouting such tripe eta “chiropractic neurologist” :wtf:

I think it would be equally interesting and useful to hold groups of people who don’t use these approaches to find out why not and how they are affected by ME symptoms.

None of the movement is necessary or desirable, using a picture as background makes some of the text hard to read. They serve people who are likely to have cognitive difficulties. The format should be as clean and uncluttered as possible.

This report about energy impairment may be interesting to you @Chesley https://www.s4me.info/threads/centre-for-welfare-reform-report-energy-impairment-and-disability.14887/

Agree with others overall impression that this is a positive step. In the same way the NiCE guidelines were a positive step. Just like the guidelines this isn’t a magic wand but does give a basis to get better outcomes in how NHS organisations and staff deal with pwme. Hopefully some...

As a carer??

The sound of it is something quite atrocious the hype that is

Spend the time energy and money on getting research done and on individual advocacy support for people with severe/very severe ME.

Group ME Moment :whistle:

Definitely - its hitting the ball over the boundary a maximum score for one hit here’s England captain hitting 3 consecutive 6s earlier this summer https://www.skysports.com/watch/video/sports/cricket/12913428/ben-stokes-smashes-three-consecutive-sixes-to-reach-century-at-lords

In cricket terminology @dave30th hits it for six :emoji_cricket::)

I reckon it’s only going to be of interest to see if there’s a difference between results when in/ out of PEM for each of us using the same device. Comparing against others probably pointless.

Yeah and gradual onset pwME more than likely already on SSRIs before finally getting diagnosed. And yet it doesn’t prevent the worsening.