Coronavirus: Advice from ME organisations

And Snake Oil Sunday

 

https://www.s4me.info/threads/the-o...ation-and-the-fatigue-super-conference.11185/

 

https://twitter.com/user/status/1253658672905011200

 

Thankyou for saying this. The lack of time frames aNd urgency is both apparent and unacceptable. I note that for dementia the G8 leaders have a target for some king of treatment to be found by 2025. The U.K. government I think that have doubled dementia research funding from c £80m - £160m per year. Sure dementia is probably more universally disabling, is common and has huge economic consequences so this is fitting. But m.e is sapping the life out of young people, the research effort is nowhere near enough and there’s been neglect for decades - none of that is ok.

If the economic cost of dementia in uk is £30b per year & M.E £3b (although other estimates have been higher ) one tenth of dementia research quota from the state would get us £16m per year. If you quarter that to just allow for the severely affected , that’s still £4m per year, atleast, is what we should be getting.

It seems to me that ME was repackaged as fatigue to parcel it off to the non medical side of things, deliberately. We need a complete u turn, investment and fitting urgency. That means time frames, targets, over seeing committee’s etc not just wafting around for years pretending a highlight notice or a few grants is getting us anywhere. Yes we need to improve the private fundraising capacity of our U.K. and global charities, i’m not sure how but employing professional staff seems a start but the establishment has caused us many problems and the state has a role to improve it and it’s not playing its part enough. I completely agree that this severe chronic illness just isn’t being treated as we need.

I saw a dr say that drs weren’t speaking out about covid management worried their grants would be hit. I suspect the conservatism of some CFS drs in not being both more ambitious and critical of efforts is due to that. Eg Lenny Jason on recent nih call. Diplomatic. It will be interesting to see truly how post covid debilitation is handled in various countries to see if anything much has been learned.

 

Since I became ill in 1968 there has not been a single treatment from the medical profession that has helped me.

Even worse, doctors do not understand the disease and have no insight into what I experience - no fatigue, but fatiguability!!! I cannot go for any other condition secure that they understand the limitations of my ME for any treatment.

It is totally unacceptable even without getting into the iatrogenic harm caused by the BPS brigade or the PTSD most of have from the horrendous treatment by certain members of the medical profession.

 

In Whitty's defence, he does not specify that exercise is a "good thing" (whatever that might be) for the individual patient. It seems to be some abstract notion of "good thingness" that he is contemplating

 

surprise! (not)..........OHC who used to be "one of the world’s leading clinics specialising in ME, CFS and Fibromyalgia"

are now "
one of the world’s leading clinics specialising in ME, CFS and
Post-Viral Fatigue."

 

Strange..why did they stop including fibromyalgia in their list of conditions? Did something happen to make them change their minds?!

 

Emerge Australia
Coronavirus and ME - Simplified facts
https://www.emerge.org.au/Pages/Blo...d50-54077a113b14&IsPreview=true&PostType=Blog

 

This isn't advice from an ME organisation, but people may find it interesting to see how GPs are being told to approach practice from now on (by NHS England):

https://www.england.nhs.uk/coronavi...imary-Care-SOP-GP-Practice-V3-29-May-2020.pdf