A new UK Health Secretary to Lobby about ME/CFS

Jonathan Edwards

Jonathan Edwards

Senior Member (Voting Rights)
This is politics but from the perspective of the general politics of ME/CFS services.

The UK Health Secretary has resigned. He did not appear to be interested in ME/CFS. Moreover, he was very strongly in favour of the community-based medicine that chokes the chances of any innovation for ME/CFS.

It would be interesting to know who is to replace him. In the past Darren Jones has expressed support for (for Carol Monaghan's campaign). It is also interesting that the DHSC has thought fit to fund SequenceME, apparently sidestepping MRC inertia.

Some progress has been made with NHS issues but it would be good to get an intelligent person in charge who really understands the big picture - the need to abolish the internal market and get people seen by competent specialists from the word go.
 
The whole approach favored by Streeting and all the "overdiagnosis" initiatives seemed very unhelpful to me and the total opposite tack to what is needed. I hope someone more interested in health outcomes rather than cost cutting comes into the post (and does not have to leave immediately!). Is this likely, though?
 
Ariel said:
The whole approach favored by Streeting and all the "overdiagnosis" initiatives seemed very unhelpful to me and the total opposite tack to what is needed. I hope someone more interested in health outcomes rather than cost cutting comes into the post (and does not have to leave immediately!). Is this likely, though?
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Not to get too political but just reading the Guardian profiles for the major contenders for leader, Streeting looks by far the worst on policy. I suspect that whoever is in charge the pressure will be to appoint someone more credible with voters interested in NHS services.

Maybe Darren Jones can put in a word. ;)
 
Jonathan Edwards said:
James Murray
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From his maiden speech in 2020:
In the late 2000s, I was diagnosed with a rare, long-term neurological condition called myasthenia gravis. It causes muscle weakness, which made it difficult, or sometimes impossible, for me to do things like go running, speak at length or smile.

But the NHS came to my rescue. My wonderful consultant and all his colleagues got me through a major operation and on to a painstakingly calibrated set of medications. I have been symptom-free since the early 2010s, and I will fight every day for our NHS with the strength that it has given me back.
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He has experience with severe illness, which luckily is being managed well. One could hope that he appreciates the value of having expertise at the hospitals.
 
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Utsikt said:
From his maiden speech in 2020:

He has experience with severe illness, which luckily is being managed well. One could hope that he appreciates the value of having expertise at the hospitals.
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was about to post the exact same thing. I read that and the line about even difficult talking and felt hope at least that it might be someone who when you have to describe the depth of some of the things we suffer doesn't think we are being 'dramatic' or 'pathetic'

I read his description of his care and basically yearned. Is it a good thing that he is familiar with departmetns like neurology (I guess) of the type that apply to his area?

...and maybe what 'good' can really look like vs what I imagine is lots of people with initiatives lining up to give the bps-related spiels
 
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