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"Demystifying CFS / ME" – Jessica Bavinton (recording of October 2015 webinar)

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Dolphin

Senior Member
Messages
17,567
Jessica Bavinton is a physiotherapist who "treats" CFS were graded exercise therapy. She was one of the authors of the graded exercise therapy manuals used in the PACE trial.

This is an unofficial recording that was passed to me:

https://www.dropbox.com/s/bjwqnhxufqn2uvo/Bavinton VRA webinar.flv?dl=0

Comment: I am not a fan of the graded exercise therapy approach as a way of treating CFS.
 
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user9876

Senior Member
Messages
4,556
Dolphin said:
Yes. I believe disability insurance companies have paid for people's appointments with Jessica (and similar people).
Click to expand...

Given she is an author of the PACE paper that boosted its results I wonder what type of legal position that puts her in if she is using PACE as a way to claim the success of treatments that she is selling to the disability insurance companies.
 
Esther12

Esther12

Senior Member
Messages
13,774
This was quite funny in that she spends a fair ammount of time warning about 'snake oil' worthless treatments.

She talked about how, if you have a setback, you should carry on, which is different to the condition she was comparing it to. Encouraging the view symptoms are normal and not to be feared. Stretching beyond limits causes improvement. She said 25% recover and that people should be 'positive' avout rehabilitation and recovery... that you should have an expectation that someone will get better and that this attitude is important for return to work. Apprarently the VRA is the only approved training provider for the NHS.

At the end she gets asked about the ethical problems of being 'postive' about return to work when there's no RCT evidence showing GET is effective for achieving return to work. Her response is not impressive.
 
Daisymay

Daisymay

Senior Member
Messages
754
jaybird1 said:
I was 'treated' by JB for CFS, paid through work health insurance scheme. I did 23+ weeks of GET, ended up needing a walking stick and losing my job. She warned me about an online forum called 'Phoenix Rising'......
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I'm really sorry but not surprised to hear GET made you worse, I hope thing will slowly improve for you over time.

It's totally inexcusable for doctors/physios to keep on prescribing GET.

And what about informed consent?

I bet she didn't tell you of the scientific evidence which shows GET is contraindicated, that ME is a serious multi system disease, not behavioural?

The law on consent requires patients are fully informed before undergoing any treatment.

Thanks for informing us that she was warning you against coming here to PR. That really says it all doesn't it. Fully informed patients simply wouldn't undertake CBT or GET.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Why am I so surprised that I continue to be surprised just how low calibre the PACE people were?
This bears no resemblance to an intellectually competent presentation. She might as well be selling cosmetics.
This sort of drivel was ditched in rheumatology years ago.
These people desperately need someone to tell them that they have no idea what they are doing and have no business in research.
I guess someone did tell them.
Hm...
 
jaybird1

jaybird1

Messages
44
I had to wait until I had a clear diagnosis of chronic fatigue syndrome before she would treat me. I hadn't heard any of the negative info about CBT and GET before being treated. It was only after I became worse and going through the copious amounts of notes, exercise and symptom diaries that I saw I'd scribbled the words 'phoenix rising' on a page, so looked this forum up. Guess hindsight is a marvelous thing!
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Hi @jaybird1 , welcome to PR and I'm so sorry you've had such a horrible experience. I hope your health will improve.

jaybird1 said:
I've just seen that someone has posted my comment about JB on twitter; would appreciate being asked if that's ok? Or is permission implied by writing on the forum? Not posted before....thanks :)
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This section of Phoenix is open to the public, so posting here means anyone can refer to threads on twitter etc. If you want to say things just to members, do it in the members only section.

I guess you could delete or alter your message, if you don't want it to be public. Though if someone has already copied and pasted I guess it's too late. I agree it does feel like a bit of an invasion of privacy, especially as they should have noticed it was your first post. I hope it hasn't upset you too much. You could perhaps tweet back to the person who posted it and ask them to take down their tweet, as well as deleting it from here.

Best wishes, Trish
 
Esther12

Esther12

Senior Member
Messages
13,774
jaybird1 said:
My treatment started in 2014 before the current reviews of Pace discrediting it but I was informed by the insurance company that the treatment was evidence based. And yes you are told to push through the pain and exhaustion and keep going.
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Really sorry to hear about all this.

As a lot of this forum is open to everyone, many of us avoid using our real names. Stuff on the internet can get pretty freely passed around, so it's worth being a bit cautious even in the members only section, where things are not meant to be posted elsewhere. You never know who might have signed up as a member.

Examples of bad behaviour from insurance companies, eg: them misrepresenting CBT/GET might be of use, so I wouldn't chuck out any records you may have.
 
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