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

[Seven7]

1) we need to retract PACE was this will not stop.
2) Who is a member of this patient organization? How can we represent real Cfs patients. Maybe we force them to rename and not use ME Cfs name? They can use CF?
Maybe we can get to the board somehow.

 

[slysaint]

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!

It's still there and although AfME tried to plug their childrens services the person you replied to dug further

Rachel Johnson Oh hang on, just seen something on Twitter and FB about AfME supporting webinars for GPs by Hazel O'Dowd, PACE psychologist. Really don't like that!! If that's true Action for ME please please stop teaching GPs that it's all about psychology! Otherwise you're just making it all so much worse for us all.
2 · 18 hrs
Action for M.E. Hi Rachel, I think there's a bit of a misunderstanding here! Action for M.E. has sponsored a series of webinars which included an introduction for GPs with Dr Hazel O’Dowd and a recent one on M.E. and POTS led by Prof Julia Newton and Dr Lesley Kavi.

The webinar facilitated by Dr O’Dowd focused on the current biological evidence base for M.E./CFS, diagnosis (including the importance of making a positive diagnosis and the role of post-exertional malaise as a key defining feature of M.E.), treatment options for specific symptoms, CBT/GET (including the concerns and controversies surrounding these with a focus on the importance of patient choice and partnership in decision-making about any form of treatment) and the fluctuating nature of the illness, which requires ongoing monitoring of changes in symptoms.

Clinicians who have led educational webinars for Action for M.E. have done so in their own time and have not been paid.

Rachel Johnson: OK thanks. Maybe there are actual doctors who could be giving GPs training about biological illness though? Not psychologists who are really not experts on the physical illness or current biomedical research into ME. Not sure having the AfME logo associated with webinars by psychologists is very helpful. Just my opinion. Medical talks should maybe be given by medics, not psychs.
2 · 16 hrs

Raisa Wiemes Dr Hazel O'Dowd was on of the PACE authors signatories to the PACE-GATE editorial that flagged up flaws!!

Rachel Johnson: Thats why I don't quite understand why an ME charity is happy to be associated with her webinars. You wouldn't find psychologists teaching GPs about the biology of cancer or really any other major life impacting illness. By all means get psychs to teach GPs about the devastating psychological impact this illness has on lives and about how to support their patients (treating patients with belief and understanding for example), but psychs lecturing about medical matters is just weird.


I can't get at the next 6 comments as am not 'on' FB.

AfME as usual say it's all a big misunderstanding

 

[Keith Geraghty]

From Dr Hazel ODowd's previous study - setting out the role of CBT - which is to change beliefs

Condition 1 – description of the CBT intervention

The CBT used in this trial was designed to do two things: first to attempt to modify thoughts and beliefs about symptoms and illness, and second to attempt to modify behavioural responses to symptoms and illness, such as rest, sleep and activity.

The ultimate goal of the treatment was to increase adaptive coping strategies and therefore reduce the distress and disability.

The content of the programme included:
● Elucidation of core beliefs regarding their illness and its management.
● Monitoring of activity levels and introduction of appropriate timetable.
● Introduction to exercises designed to increase general level of fitness, balance and confidence in exercise. A range of aerobic, strength, balance and stretching exercises were taught.
● Behavioural modification of sleep patterns.
● Mood management advice.
● Goal setting.

 

[Keith Geraghty]

I posted this on AfME facebook -- see how long it lasts

Dr Hazel ODowd signed a letter in response to my PACE-GATE article which detailed the major flaws of the PACE Trial. In this letter all 19 authors, including Dr ODowd stated they would "correct me". However, they did little to correct me as a series of 15 special commentaries have been submitted to the Jr of Health Psychology that overwhelmingly support my points of contest. It is Dr ODowd who needs to be corrected and I hope she will disclose her private practice and private limited company that makes money from CBT-GET services. Asking Dr ODowd to explain current controversies in ME/CFS is a bit of an insult to ME/CFS patients - given she is author of one of the most controversial trials in the history of medicine.

I was going to add

asking Dr ODowd to explain current controversies in ME/CFS would be a bit like asking Dr Gobbels to explain the benefits of National Socialsim ---- but I left that out.

 

[lilpink]

asking Dr ODowd to explain current controversies in ME/CFS would be a bit like asking Dr Gobbels to explain the benefits of National Socialsim ---- but I left that out.

 

[A.B.]

The webinar facilitated by Dr O’Dowd focused on the current biological evidence base for M.E./CFS

Haha, no. Just no.

 

[trishrhymes]

If they are so proud of their webinar, perhaps they could make it available for us all to see too, not keep it behind a GP only paywall.

I've just added a comment to that effect to the facebook discussion. Thank you @Keith Geraghty for adding your explanation about the role of Ms O'Dowd.

 

[Solstice]

I'm surprised to see all those comments staying up. I guess they can't remove them anymore because it would make them look even more suspicious for onlookers?

 

[Snowdrop]

"Psych's lecturing about medical matters is just weird" I agree. There is no need to go there when you can get a medical specialist to lecture on whichever specialty is being lectured on. Duh.

 

[slysaint]

This thread currently comes up on the first page when googling Hazel O'Dowd; with the second post @Esther12 ,
which is good.........

Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME ...
forums.phoenixrising.me › ... › News and Research › General ME/CFS News
2 days ago - 20 posts - ‎12 authors
Hazel O'Dowd in 2017? I can't believe @Action for M.E. are promoting people like this. How can I still be surprised by how terrible Action for ME ...

 

[NelliePledge]

Facebook posts are still there AfME have posted they're not doing anything online today due to staff training so they won't be taking them down today.