Our thanks to Ted Higgins for sharing this update on the ME/CFS awareness campaign. In his own words. Ed
This is the thirtieth year of ‘ME/CFS Awareness Week’ and 2022 is a highly significant year.
At long last the illness has now risen to be topical news for a number of very good reasons.
What is ME/CFS ?
ME/CFS is a serious chronic complex illness that debilitates 250,000 people in the UK, more than 550 on the Isle of Wight, some serious and bed-bound, some milder.
Tragically the symptoms of their illness render them unable to speak up or fight their cause. They’re easy to ignore and neglect.
Now things have changed, ending many decades of neglect when priorities and aims have not put patient care first. Eminent people have created a stigma (e.g. a complaint of scatty women, malingering) and an acrimonious atmosphere surrounding all discussion and research.
The consequence is that there have been a lack of advances in understanding or treatment.
Radical changes to guidelines
At the end of 2021 NICE (National Institute for Health and Care Excellence) at last published revised guidelines for ME/CFS. This was the conclusion of almost four years of rigorous development, in the face of opposition from parts of the medical establishment.
The previous treatment, graduated exercise therapy (devised by psychiatrists), is now completely rejected and is confirmed to be harmful to ME/CFS sufferers.
There is now a huge task to implement the new guidelines, to sway the medical profession to support the new outlook. Their training probably didn’t even mention ME/CFS or told them it was a ‘non-illness’.
Covid pandemic
Unavoidably prominent in everyone’s mind is Covid. For many this has led to ‘Long Covid’ (at least 2,000 and increasing in the Island’s population).
Although both are not yet well understood it is becoming clear that Long Covid is substantially ME/CFS. Huge political and financial resources are available for Long Covid, in stark contrast to pitiful research into ME/CFS.
This silver lining from Covid should lead to knowledge that should also hugely benefit the ME /CFS community.
The Tangled Story of ME/CFS
The intriguing and scandalous history of ME/CFS has been told in a new video ‘Dialogues for a Neglected Illness’, released in December 2021.
It is three years’ work, sponsored by the Wellcome Trust.
You can watch it online.
The Future
Open minded biomedical research is desperately needed. Without a basic understanding so much effort is wasted arguing, where the answer is that we simply don’t know. This effort should be put into research to achieve progress for sufferers.
Surely more than 2,500 disabled Isle of Wight constituents should warrant active support from our parliamentary representative. The loss and cost to society is huge. The neglect of ME/CFS has frequently been talked about in parliament, but nothing of substance follows. Leadership is required to bring about real progress that is so desperately needed.
With awareness most people would strongly support efforts to release ME/CFS sufferers from their cruel condition.
Find out more about the condition over on the ME Association Website.
