UK: Collecting evidence on problematic UK approaches to ME/CFS and Long Covid

JellyBabyKid

JellyBabyKid

Senior Member (Voting Rights)
This post has been copied from
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
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A more serious version of my earlier post to join the dots I currently see:
  • Culture of disbelief (Govt & healthcare): only see through the lens of their own experience
  • Not counting Long Covid and dismissing it as anxiety
  • Dismissing rise of anxiety & depression as the "normal stresses of life" and "over medicalising"
  • Renaming ME as FND: stops further investigations & and bypasses the NICE guidelines
  • Using research that is pre-NICE to justify changing method of assessing patients/clinics and also presented as a treatment "toolkit" (PROMS)
  • Renaming ME clinics as general "Fatigue" clinics; ignores PEM & bypasses the NICE guidelines
  • Presenting rehab as treatment and discharge from clinics as treated
  • No consultant or reviews so lack of evidence
  • Ignoring diagnoses of SevereME in hospital and bypasses the NICE guidelines allowing DOL/sectioning
  • Changes to the benefits system: "everyone capable of some work" & removal of substantial risk
  • Refusal at all levels to listen to patient experience or any criticism, even where justified
  • Attempts to exit the human rights act and overturn supreme court ruling re safely of Rwanda via legislation
There is a systemic erosion of equality, justice and consideration and the wilful deafness of privilege and power

I would be interested in putting evidence against all of these points. Some we already have e.g PROMS and my correspondence with ministers around the DWP & the rise of the culture of disbelief, but if anyone else can help with the rest, this might be useful to pull together, along with figuring out measures around FND numbers and SevereME in hospital.

Edit to add additional bullet point around human right act
 
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I would add to this:

Tainted blood
Vaginal mesh
AIDS
Hillsborough
Post Office
Tavistock Clinic?

There is a culture of disbelief and patient / victim blaming with those harmed having to prove the injustice perpetrated against them and pursue reparation - but how many have died in the meantime? and how much changes as a result?

this might be a wider cultural / justice issue?
 
I agree it's a wider cultural and justice issue. We may need separate discussion threads on different aspects if this discussion develops. I think getting other UK organisations fighting for justice involved could be worthwhile if they can be presented with a clear case about ME/CFS.

I think on this thread it's probably more realistic to start with ME/CFS and Long Covid specific information gathering.

@JellyBabyKid do you envisage creating a document summarising the problems with the problematic directions we see the UK going on ME/CFS and Long Covid, that can be used in advocacy?
 
JellyBabyKid said:
I would add to this:

Tainted blood
Vaginal mesh
AIDS
Hillsborough
Post Office
Tavistock Clinic?

There is a culture of disbelief and patient / victim blaming with those harmed having to prove the injustice perpetrated against them and pursue reparation - but how many have died in the meantime? and how much changes as a result?

this might be a wider cultural / justice issue?
Click to expand...

An article on this subject from the Law Society Gazette:

https://www.lawgazette.co.uk/featur...City+solicitor+jailed+for+15+years_05/07/2024
 
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