United Kingdom: Sussex & Kent ME/CFS Society News

Ironic that Colin Bartons comment suggests he was unaware re severe and very severe til now

Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'.

Be careful what you wish for , specialist provision may be more old wine in new bottles .
If there's a need identified , and agreed as needing resourced, who oversees provision model and delivery ...

 

"Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'."



Yeah right. It's him and his Society who have overlooked severe and very severe ME patients for decades. When I was severe, all Colin Barton had to say to me was "Oh Dear, are you taking any medication?". I was Way too sick to get to cafe meetings, still too sick/cognitively disabled to be online, I gave up on the Sussex Society in frustration and despair after a number of phone calls to Mr Barton.



In 2019 Colin Barton, (Chair of the Sussex patient group and charity) spoke to the SMC associated journalist Kate Kelland at Reuters, he gave her ammunition for her ME patient-bashing article :

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers.'

https://www.reuters.com/investigates/special-report/science-socialmedia/





In 2010 Colin Barton got an article into the local Brighton paper, The Argus, about a survey his Sussex group ran.

'Working with the Brighton And Sussex Medical School, our organisation ran a survey about the experiences of those affected by Myalgic Encephalopathy or Chronic Fatigue Syndrome across the county. This is the first professionally run comprehensive study of its type and the findings are being seriously viewed by service providers and users alike....

..... findings show that a number of treatments and approaches are helping a lot of people affected by the debilitating illness

....Treatments such as specialist Cognitive Behavioural Therapy has helped 74% of those who have tried it

Lifestyle courses run by the NHS center and the Expert Patient Programmes are helping a lot of people, and alternative approaches such as yoga, nutrition, acupuncture and homeopathy along with the Lightning Process are rated highly by many patients who have benefited from them.'

https://www.theargus.co.uk/news/8171849.helping-me/




The 2008 Sussex CFS Society Annual Conference hosted a Lightning Process stand by the owner of a local Lightning Process Centre, Linda Morgan, called the Swallows Retreat.

Lightning Process Trainer Linda Morgan hosted a get together for her LP graduates, who all seemed to be teenage girls, some stated they had recovered from ME by doing Lightning with Linda. At the get-together at the Swallows Lightning Process Retreat were Sussex NHS CFS Clinical Lead Dr Michael Broughton, Sussex ME/CFS Society Chair Colin Barton, and Phil Parker:



Phil Parker at Swallows
Sunday, March 1, 2009 At 8:26PM

'Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda's Lightning Process participants at Swallows.

https://web.archive.org/web/2009071...uk/home/2009/3/1/phil-parker-at-swallows.html





Sussex ME/CFS Society News 2016:

'Paediatric Medical Advisor to the Sussex & Kent ME/CFS Society, Dr Esther Crawley has been promoted to Professor and appointed to the Chair of Professor of Child Health at the University of Bristol.

https://measussex.org.uk/esther-crawley-now-professor-july/




Current Sussex ME/CFS Society Medical Advisor Dr Alastair Miller wrote in the Guardian during the Inquest for Maeve Boothby-O'Neil, to promote CBT for ME.

Dr Alastair Miller:

'It is also clear to doctors in the field that the individuals who recover best from ME/CFS are those who steer a “middle road” between excess physical activity and excess rest. Patients can’t exercise their way out of the illness but neither will total inactivity deliver recovery. The fact that we use CBT and other behavioural approaches in no way implies that we do not believe this is a physical condition. After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks. Nobody has ever suggested that those conditions are “all in the mind”.'

https://www.theguardian.com/comment...case-highlights-clashing-nhs-narratives-on-me

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It's really a constant in all of this that those responsible for this disaster never feel responsible for anything. They have endless capacity to blame the people they failed for their own failures. Or general vibes. Or even completely fake delusional concepts.

In large part because being responsible for something means that someone should be holding them accountable, and the opposite is happening. It means enforcement, and here it goes the other way around: they are expected to do the wrong thing that is authorized, and will be stopped from doing the right thing that isn't.

People rarely do the right thing of their own volition. Most people are wrong about most things, it's only proper education that can make functioning adults, because millions of people worked for millennia to achieve better. And when professionals are taught the wrong thing, you get the worst possible combination: people doing the wrong thing while being absolutely convinced they are doing the right thing. The exact same problem as with a rigid ideology.

Experts generally don't do better than the average person just because they're well-trained. They do better because they are held accountable by systems and institutions that provide them with the resources they need. Those systems and institutions learn and improve. With us, it's forbidden. Hence they do no better than literally nothing.

When the whole system is wrong about something, experts will often do worse than a completely untrained random person. Worse yet, systems that are in the wrong almost always reinforce their positions to safeguard from oversight and embarrassment.

Human folly truly is as infinite as the universe.

 

Goes with the territory. Good at soundbites though for the easily deceived.