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

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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

 

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?

 

In all honesty, I don't have a plan. Yet.

At present it is just thinking, defining the problem, asking some questions and gathering information.

Oh. This has got me thinking...Thanks @Trish !

 

This happened at the Bath clinic 10 years ago, sometime between 2012 and early 2014, when they began helping cancer patients managing fatigue.