UK ME Association 2025: Prognosis, Permanency and Quality of Life in ME/CFS

[Cinders66]

We have imo contradictory position where we have enough evidence that the need for early diagnosis and careful management is recognised globally & in most uk literature as being crucial to provide “best outcomes” (or conversely, prevent bad outcomes) but no clear recognition that nhs failure to do this until recently, with patient blaming narratives, contraindicated treatment approaches and sheer lack of belief and appropriate support has contributed to the current approx uk level of m.e disability of 75% can’t work, 25% house or bedbound

 

[Cinders66]

In less official literature of the Xmas appeal,
The ME association seem more happy to infer connection between decades of poor nhs management & the chronic substantial disability of the ME community who are way beyond needing a period of convalescence : “There are over 400,000 people in the uk with me. years of misdiagnosis and poor treatment have led to severe illness, and sadly, sometimes death”
Next step - using this as basis of call for increased and fair research funding.

When Rest Isn’t Enough: Cracking ME’s Energy Crash – Big Give

We’re raising £40,000 to fund a research project investigating the crushing exhaustion people with ME face after activity. This study will uncover what goes wrong in their muscles during Post-Exertional Malaise; bringing us closer to diagnosis, understanding, and hope for treatment.…

donate.biggive.org

 

[MrMagoo]

In less official literature of the Xmas appeal,
The ME association seem more happy to infer connection between decades of poor nhs management & the chronic substantial disability of the ME community who are way beyond needing a period of convalescence : “There are over 400,000 people in the uk with me. years of misdiagnosis and poor treatment have led to severe illness, and sadly, sometimes death”
Next step - using this as basis of call for increased and fair research funding.

When Rest Isn’t Enough: Cracking ME’s Energy Crash – Big Give

We’re raising £40,000 to fund a research project investigating the crushing exhaustion people with ME face after activity. This study will uncover what goes wrong in their muscles during Post-Exertional Malaise; bringing us closer to diagnosis, understanding, and hope for treatment.…

donate.biggive.org

I still would like treatment to undo the CBT the NHS gave me, which it no longer recommends.