Ysabelle-S
Highly Vexatious
- Messages
- 524
The whole fatigue thing is turning into an absolute racket.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
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).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
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
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?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
What is the "Association for CFS/ME"?
CFS/ME is not a mental health issue.
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.
Dr Hazel O’Dowd, Clinical Champion for CFS/M.E.isnt she some clinical lead for a entire area of the South East?
Who are we?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?
Dr Hazel O’Dowd, Clinical Champion for CFS/M.E.
I've just been on the AfME facebook page and responded to a mother of a child with ME by recommending TYMES trust and Phoenix Rising, and been very critical of GET/CBT. I wonder how long my posts will last there!
The British Association for CFS/ME is basically the people who work in the CBT/GET/rehab NHS CFS/ME clinics.What is the "Association for CFS/ME"?