United Kingdom: Sussex & Kent ME/CFS Society News

We are very fortunate in the UK to have the British Association of Clinicians in ME/CFS (BACME) that has a membership of around 200 experienced NHS clinicians who assess and manage hundreds of people affected by ME/CFS weekly helping many towards better health. These professionals work to the current NICE guidelines.


The specialist centres should be further developed and new ones established where there are none presently.


A good example of the specialist services is the Sussex-wide ME/CFS Service.
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:emoji_angry::mad:! Very much a sign of what is coming for ME patients in the UK. BACME has its model and this is what its going to roll out country wide. Rehab based on dysfunction, doesn't matter if its the same thing renamed its coming to you soon.
 
Suffolkres said:
measussex.org.uk

Build on the positives - Sussex & Kent ME/CFS Society

We are very fortunate in the UK to have the British Association of Clinicians in ME/CFS (BACME) that has a membership of around 200 experienced NHS clinicians who assess and manage hundreds of people affected by ME/CFS weekly helping many towards better health. These professionals work to the...
measussex.org.uk measussex.org.uk
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They have 200 members and this is the best they can do?!

I have seen plenty of material produced by a single person with no medical training that was infinitely better, and it wasn't even that good it's just that at least it was coherent with reality and not a bunch of blatant nonsense.
 
bobbler said:
This Neil Riley one is interesting to see
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@Sly Saint Wrote:
"this page on their site of congratulations is revealing:
https://measussex.org.uk/about-us/30-years-plus/


Pass the sick bucket. 27 accolades from the great and the good, all basically quoting or paraphrasing the Sussex ME/CFS Society's own perpetually self-aggrandizing self promoting postings about itself.

The actual Brighton/Hove/Sussex ME patients voices are never heard. Unless one means the handful who perform the role of 'good' Society members praising the society. The actual ME patients of Sussex are drowned out by the voices of MPs, famous people's and elevated professionals' voices endlessly praising the faux patient group.

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Colin Barton claiming that Sussex ME patients are helped by Lightning Process as late as in 2020. Colin Barton's perpetually rosy message is 'timely diagnosis and receiving the best attention possible leads to people (ME patients) making significant improvements with some able to move on to lead active lives'.

That is the cosy fiction that the Sussex Society peddles to MPs and the media - repeatedly, year after year. But, as local ME/CFS clinics don't do long term follow ups, how would they know how many Sussex ME patients 'move on to lead active lives'?



The Sussex & Kent ME/CFS Society News​

By SMEAdmin On 7th January 2020

'Fortunately, The Sussex & Kent ME/CFS Society has seen a large number of its members obtaining a timely definitive diagnosis and receiving the best attention available. This has led to people making significant improvements with some able to move on to lead active lives. Regrettably, we are also aware of many that have been less fortunate and continue to be seriously ill and virtually housebound and in need of care.

It is indeed welcome that we have good NHS specialist adult services locally that have very experienced therapists working with clinicians Dr Alan Stewart and Dr Mario Vergara-Williamson. The Brighton based NHS Children and Young people’s service is also helping youngsters and their families. Other approaches such as Yoga classes and the Lightning Process have helped a good many as well.

Research continues to progress, with ME/CFS being the only medical condition for which Medical Research Council (MRC) has a dedicated Highlight Notice. In our area, the studies led by Prof Neil Harrison and Dr Jessica Eccles participated in by members of ours and those seen at the Sussex-wide CFS/ME Service are showing some interesting findings that will increase the biomedical understanding of ME/CFS/FM that could help management strategies in the future.

Colin Barton

Chairman

measussex.org.uk

Year Change - January - Sussex & Kent ME/CFS Society

Fortunately, The Sussex & Kent ME/CFS Society has seen a large number of its members obtaining a timely definitive diagnosis and receiving the best attention available. This has led to people making significant improvements with some able to move on to lead active lives. Regrettably, we are also...
measussex.org.uk measussex.org.uk






So, 5 years on from the 2020 Sussex News above, what were the findings from studies led by Prof Neil Harrison and Dr Jessica Eccles which were, supposedly, to increase the biomedical understanding of ME/CFS/FM and help management strategies in the future?

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