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Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

Y

Ysabelle-S

Highly Vexatious
Messages
524
Keith Geraghty tweeted this a few minutes ago. Keith is now officially vexatious, if he wasn't already. Anyone still giving money to Action for ME, please just stop. They are not helping patients one iota. There are better groups out there. We need to focus patient donations in a way that's more efficient and supportive of helpful science-based research. We want to change our lives. We want to get our lives back. We owe nothing to those standing in our way.

Geraghty asked to stop emailing Sonia.JPG
 
Leopardtail

Leopardtail

Senior Member
Messages
1,151
Location
England
slysaint said:
This is probably not news to a lot of people but given that O'Dowd recently confirmed support for PACE and is closely associated with EC, thought I'd put it out there:

From AfME 5 year plan:

In July 2015 we sponsored
Webinars for GPs
to run a pilot webinar on M.E., led by
Dr Hazel O’Dowd, Clinical Champion for CFS/M.E. Services for Avon, Gloucester,
Wiltshire and Somerset. This attracted more than 150 GPs and had its running time
extended by an hour to accommodate the many questions they asked.

Jan 2017 also sponsored by AfME:
Meeting the Challenge of CFS /M.E. (CME Webinar)
Dr O’Dowd is currently the Deputy Chair of the British Association of CFS/M.E.

https://www.webinarsforgps.com/even...ing_wp_cron=1497269211.0817880630493164062500
Click to expand...
This seems like a direct violation of their constitution that requires them to focus on the physical nature of the disease. It was formed circa 2015 (after which they funded that appalling study into CBT/GET supervised by Crawley).
 
Leopardtail

Leopardtail

Senior Member
Messages
1,151
Location
England
slysaint said:
This is probably not news to a lot of people but given that O'Dowd recently confirmed support for PACE and is closely associated with EC, thought I'd put it out there:

From AfME 5 year plan:

In July 2015 we sponsored
Webinars for GPs
to run a pilot webinar on M.E., led by
Dr Hazel O’Dowd, Clinical Champion for CFS/M.E. Services for Avon, Gloucester,
Wiltshire and Somerset. This attracted more than 150 GPs and had its running time
extended by an hour to accommodate the many questions they asked.

Jan 2017 also sponsored by AfME:
Meeting the Challenge of CFS /M.E. (CME Webinar)
Dr O’Dowd is currently the Deputy Chair of the British Association of CFS/M.E.

https://www.webinarsforgps.com/even...ing_wp_cron=1497269211.0817880630493164062500
Click to expand...
Valentijn said:
Or they're incredibly stupid/gullible, and unable to assess research papers or research proposals. In which case they still shouldn't be representing patients or getting any funds to pass out :p
Click to expand...
Given that they are a registered charity and are violating their own rules, I wonder whether we can do something about them through the charity regulator?
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
Leopardtail said:
What is the "Association for CFS/ME"?
Click to expand...

https://www.bacme.info/

This pdf is filed under BACME Resources: https://www.bacme.info/sites/bacme.info/files/file-attachments/BACME Therapy & Symptom Management Guide.pdf

They're recommending GET and CBT and describing it as evidence based. That alone makes them highly suspicious. However, they have some other information that's more in line with reality - autonomic problems, adverse reactions to drugs, etc. But they are pushing GET and CBT by the looks of it.

EDIT: They say this -

CFS/ME is not a mental health issue.
Click to expand...

At least that's an improvement, but they need to deal with the exercise intolerance issues which make GET so dangerous and irresponsible. But what is a psychologist doing as deputy chair?
 
Last edited:
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Let us presume you want to give AfME the benefit of the doubt. Its entirely appropriate to ask them to explain, or for them to engage with the community generally on their own initiative. However by not doing so, by choosing to not explain, they undercut any basis for a benefit of doubt. If they cannot engage with the community, there is no basis for doubt that their actions are problematic.
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
alex3619 said:
Let us presume you want to give AfME the benefit of the doubt. Its entirely appropriate to ask them to explain, or for them to engage with the community generally on their own initiative. However by not doing so, by choosing to not explain, they undercut any basis for a benefit of doubt. If they cannot engage with the community, there is no basis for doubt that their actions are problematic.
Click to expand...

Especially since they want donations from the patient community. I've never given them a penny, and never will.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Looks like AfME will continue to push GET and CBT and promote / fund the 'work' of the likes of Crawley and O'Dowd. They get away with it by paying lip service to ME being a physical illness, while at the same time saying they can cure it with CBT/GET. From what I gather, BACME is the organisation set up and run by and for the psychologists and others who run CBT/GET based therapies.

It's going to be a long hard road getting rid of them, especially now they are lumping us in with all the other so called MUS and even with other long term well explained conditions so they can dump us all in their generic therapy groups. It's a cult that is spreading like wildfire. There's lots of money to be made by claiming you can improve the health of everyone with persistent physical symptoms and save the NHS actually having to do proper medicine.

We need more David Tullers to get their shoddy research taken down.

Even if a diagnostic test is found for ME we will not be safe from this crap, because they are spreading their net to include everything chronic.

Sorry to be so gloomy.

eeyore.jpg
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
I don't trust BACME. They're pushing irresponsible therapies from a dodgy trial, therapies known to harm patients. And I agree that those in this field are engaged in empire building, moving into other areas, which means sucking up money desperately needed for other things. Everyone gets harmed by that since there is no bottomless pit of money for healthcare. I think the heavy push going on at the moment is because they see their interests endangered by biomedical research and patient resistance. They want their dodgy models of treatment and disease fully in place in a way that makes it harder for them to be pushed out. PACE is being used to justify this approach in other illnesses, so they have much to lose when PACE completely falls.
 
Leopardtail

Leopardtail

Senior Member
Messages
1,151
Location
England
Ysabelle-S said:
https://www.bacme.info/

This pdf is filed under BACME Resources: https://www.bacme.info/sites/bacme.info/files/file-attachments/BACME Therapy & Symptom Management Guide.pdf

They're recommending GET and CBT and describing it as evidence based. That alone makes them highly suspicious. However, they have some other information that's more in line with reality - autonomic problems, adverse reactions to drugs, etc. But they are pushing GET and CBT by the looks of it.

EDIT: They say this -



At least that's an improvement, but they need to deal with the exercise intolerance issues which make GET so dangerous and irresponsible. But what is a psychologist doing as deputy chair?
Click to expand...
Who are we?
The British Association for CFS/ME (BACME) is the professional body for clinicians and therapists who are involved in the management of patients with CFS/ME.

That translates into the vile psychiatrists who have been terrorisising ME patients and destroying the quality of other local services.
 
Leopardtail

Leopardtail

Senior Member
Messages
1,151
Location
England
I am begninning to think we need to stage some kind of protest 'interesting enough' to get press attention. "Who flew over the cookoo's nest?" to highlight the ongoing issues with the distrust between both ME patients and researchers and the MRC/CMCC.

Given that this model is now trying to get its sticky mits on well respected dieasers e.g. Diabetes. They might have made the mistake that will get the public to care.
 
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