(Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

I know from an email that this is on July 17.

http://www.salford.ac.uk/onecpd/conferences/chronic-fatigue-syndrome-conference

 

Oh boy, here we go again.

Anybody who isn't a patient nor their representative.

 

the attendees list just shouts I a p t the pyschs new go to for control of the medical treatment /non treatment of difficult to diagnose illnesses this is very bad news .

 

I wonder who set this up? Looks quacky.

Paul Davey was a part of Action for ME's SEE ME project:

http://www.pauldavey.org.uk/about

His website says:

Not sure there's any good evidence for that with regards to ME/CFS.

The Action for ME page talks about their 'remarkable results' for SEE ME, although they included no control group in their 'project' and it's far from clear that anyone gained anything from it. They say: "By developing and demonstrating good practices in integrated health and employment support for people with M.E., the project raised aspirations and helped individuals to achieve their goals in relation to employment." What evidence is there that is helped anyone achieve their employment goals?

 

Christine Parker is from Jessica Bavinton's Vitality 360 (along with Sue Luscombe): http://vitality360.co.uk/fatigue-pain/about-us-2/about-us/our-team/

Bavinton is not an impressive human being. She was part of the old NICE committee, led development of GET for the PACE trial, was promoting the 30% 'back to normal' claim from PACE (seemingly without realising it was spin). She does a lot of work with insurance companies, and you occasionally find people talking about how they were forced to work with her 'treatment' programme by their insurance and left off even worse. She's also linked to the Vocational Rehabilitation Association which, surprise surprise, Action for ME were very happy to receive a prize from for their SEE ME project. I keep reading things that remind me how rubbish Action for ME are.

The blurb for this new meeting says: "Science is operating as it should, self-critical and open to revision, and there are several angles being explored in the studies of immune, metabolic, endocrine and nervous systems."

No. This is not science operating as it should. PACE is certainly not an example of people being self-critical and open to revision. This mess looks more like quacks trying to make money from desperate patients despite not having any good evidence that they have anything of value to offer them.

 

I'd forgotten how appalling Jessica Bavinton is.

Here she is on a forum evading comments and questions from patients while promoting PACE spin like:

https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557&start=30

Apparently while this was going on Action for ME were encouraging the moderators to delete critical posts from patients and lock threads.

 

This is people positioning for a share of the IAPT pie .

 

http://cmft.nhs.uk/childrens-hospit...ding-specialist-services/cfs-me/meet-the-team

Information for Children and Young People Leaflet

http://cmft.nhs.uk/media/1413807/cfsme info patients.pdf

 

http://www.salford.ac.uk/onecpd/media-pack
"
We can tailor a bespoke package for your organisation.

Prices are dependent on the type of event – please speak to our dedicated sponsorship team on 0161 295 3000 or you can email your enquiry."

http://www.salford.ac.uk/onecpd/about-spd/freedom-of-information-privacy-policy

maybe someone could ask them who sponsored the event? (my money is on the OHC)

 

My thought is to ignore this. But sifting through may provide some information on who is feeding misinformation through to Brine, the health minister.

 

This is local to me. It looks so ghastly I wouldn't even want to go to argue with them.

 

@Action for M.E.
this is precisely the kind of approach that renders mild to moderate and moderate to severe in children and requires addressed as a matter of urgency before IAPT undoes the progress being made re GET and CBT
Can you respond with how you propose to help with the paradigm shift required?
thanks

 

This leaflet was done in 2010 and it says at the bottom that it was supposed to have been reviewed in 2012...........I'm guessing that they didn't bother because of the PACE trial (?)

It also cites AYME :
"
Who else can help?
There is a support organisation for young people with CFS/ME:
Association for Young People with ME (AYME).
Telephone:08451 23 23 89
(Monday to Friday from 10.00 am to 2.00 pm)
Web: www.ayme.org.uk"

the web link (as I mentioned elsewhere) just takes you to a blank page saying it is reserved for future use.

AfME have supposedly taken over AYMEs Children Services; just would have expected they might have told the relevant NHS services (it's not as if there are a lot of them).

 

SHOCKING.

I tried the Optimum Health Clinic years ago. The fact that they are presenting on the 'the health scandal of our generation' makes me feel sick. They are part of the scandal.

The Chrysalis Effect looks even worse. Elaine Wilkins has absolutely no qualifications, I believe she worked is sales (make-up I think) before she started this business. What makes her think that she can rewrite the future of treatment is beyond me.

Both are businesses out to make money. They're both angling for NHS contracts. No qualifications. The OHC is, in my opinion, a pyramid scheme.