Sussex: 'Treatment for M.E. has improved'

[Firestormm]

‘Treatment for M.E. has improved’

Although far from perfect, treatment for people with M.E. has improved over the past 25 years, writes David Butler of the Sussex ME Society in a letter to the Editor. The Sussex-wide NHS M.E./CFS service has dealt with more than 3,500 referrals since 2005 and there is now a service for children with M.E. in Brighton.

Sussex Argus, p 10

I believe this refers to the paper version of the newspaper as I can't find it in the online version today. If anyone does have a copy it would be interesting to read the full account and context methinks.

 

[Indigophoton]

Sussex Argus - Letters page - May 23rd

"ME awareness say
Although things are far from perfect with the understanding and treatment of those affected by ME, much has improved over the last 25 years. Our charity was founded in Brighton 27 years ago and informs, supports and represents those affected by myalgic encephalopathy (ME) or chronic fatigue syndrome (CFS) across the region. We work closely with local and national doctors in the field and helped set up the Sussex-wide CFS/ME Service that has dealt with more than 3.500 referrals since 2005. The NHS team that has helped many towards improved health includes a specialist doctor, physiotherapists and occupational therapists along with a psychologist and administrator. There is also now a service helping children and young people with ME/CFS in Brighton. Sadly there are a number of people with the illness who remain chronically ill and are often in need or care. Call 01273 674828 for information.
David Butler, Sussex ME Society"

Copy from email.

 

[Wildcat]

.

The Sussex Society mantra "Things are getting better!"

The first Clinical Lead of the Sussex 'CFS' Services was Dr Brian Marien, a CBT Expert who had private CBT companies.
The second Clinical Lead, a GP, promoted Lightning Process.

Dr Esther Crawley is involved with Sussex children's services.

And the Sussex Society refuses to hear the patients who have been medically abused, and refuses to hear the patients who no longer go anywhere near doctors due to appallingly bad attitudes from them.

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Nothing "improved" for Sussex patient Sophia Mirza.

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Locally, the Sussex Society is known as the fatigue society, which promotes fatigue services.
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[Bob]

For everyone who isn't a UK resident, Sussex is a region in the South of England.

I'm not very familiar with them these days, but in the past The Sussex & Kent ME Society have tended to be advised by individuals who promote the cognitive-behavioural school of thought.

One of their official medical advisors is Esther Crawley, but to be fair, they do have a mixture of advisors:
http://www.measussex.org.uk/About-Us-ME-Support-in-Brighton/meet-the-medical-advisors-experts.html

 

[Wildcat]

.
And there is the Lightning Process Centre stall (the 'Swallows Retreat') at the 2008 Sussex CFS Society Conference (in the photographs)

http://www.measussex.org.uk/Main/south-east-medical-conference.html
.

 

[Wildcat]

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The Sussex Society is not very "fair" to severely affected Myalgic Encephalomyelitis sufferers. But is very "fair" to Yoga teachers who claim "success" with ME.
.

 

[Esther12]

Edit: Maybe I shouldn't say this... I have read quite a few things from this group, but have never seen Barton engage in any real debate. He does really irritate me though, so a little dig is probably okay.

Colin Barton does seem to be one of those 'positive' people who is happy to trust any claim of expertise.

Their list of patrons doesn't seem to indicate much of a capacity for critical thought:

Russell Grant.

British astrologer and media personality.

http://en.wikipedia.org/wiki/Russell_Grant

I've heard a range of complaints about the Sussex NHS CFS service being dire too. Someone told me White was involved in supervising them.

 

[Min]

I believe the late, profoundly affected myalgic encephalomyelitis sufferers Sophie Mirza and Lynn Gilderdale both lived in Sussex