O'Dowd-Crawley early intervention study

Esther12 said:
Thanks a lot of John for his persistence on this (and also to those who first raised this issue long ago).



I wonder if it would be worth a couple of people trying to do a short paper on the results (and maybe the trouble with getting the results out) to get it in the peer reviewed literature? Could also mention the spin around PACE and the difficulty of getting their prespecified results, and then ask Crawley/O'Dowd if they want their names attached?
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I think that is a good idea and one I'd be interested in pursuing. I think it could include a discussion of the file-drawer effect in general and on ME research, and something on access to data.

See update below.
 
I have received an update and they are going to refer the matter to the ICO because one of the responsible authorities (University of Bristol) is concerned that patients could be identified, 'as the study sample size was so small and from a relatively small geographic and temporal space including all the data points would make it possible for the data to become identifiable'.

I presume that will take up to 6 months more.
 
JohnTheJack said:
I have received an update and they are going to refer the matter to the ICO because one of the responsible authorities (University of Bristol) is concerned that patients could be identified, 'as the study sample size was so small and from a relatively small geographic and temporal space including all the data points would make it possible for the data to become identifiable'.
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If it is really possible to identify patients from the question: "How many hours work have you missed during the past 7 days due to health problems?" (from WPAI Qs) then I'm amazed!
 
I don't know why some assume O'Dowd has valuable expertise for patients, rather than just attracting funding? The PACE trial seems to be the closest she's come to showing she does... and that's not without its problems.

Thought this page could be of interest, announcing funding for the early intervention study: "Dr O’Dowd said: “This is very much a feasibility study but it will provide clinicians with important information around whether early intervention has positive benefits for these patients. We await the results with interest and would like to thank the Research for Patient Benefit programme for their support with our trial.”"

https://www.nbt.nhs.uk/news-media/latest-news/frenchay-lead-£250000-study-effects-early-intervention-me

There was a lot of hype for the funding of this earlier trial too, including at the BBC:

"Dr Hazel O'Dowd, project leader, believes the early stages of the new approach are already paying dividends to patients. She said: "Everyone in the scheme is absolutely delighted by the impact it is having on their lives."
http://news.bbc.co.uk/1/hi/england/1834060.stm

Null results for that one too:

https://www.ncbi.nlm.nih.gov/pubmed/17014748

All the while she'd been 'educating' others in the NHS about ME/CFS.

Even post-PACE Action for ME got her to do a webinar for GPs:


O'Dowd was involved with this hugely hyped Action for ME project that had no control group but is now apparently influencing training at the DWP: https://www.nbt.nhs.uk/news-media/l...people-chronic-fatigue-syndromeme-return-work

She shaped the BACME clinical guide being promoted by Action for ME (though the blog now seems offline?):


She was leading the 'petition' created to try to get patients to support giving more money for the services of her and her colleagues: https://www.meaction.net/2019/08/05/a-petition-cloaked-in-the-respectability-of-research/

Even more OT: I was just reading through a chapter on CFS in "An Occupational Therapist's Guide to Sleep and Sleep Problems"edited by Andrew Green, Cary Brown.
They thank O'Dowd for reading through and commenting on their chapter - it promoting PACE treatment guides and full of stuff like "Recovery from CFS/ME requires goals that evinsage a health life (Prins et al. 2006)."

https://books.google.co.uk/books?id=vqgQBgAAQBAJ&pg=PA324&lpg=PA324&dq=Hazel+O'Dowd+PACE+trial&source=bl&ots=OA8lyb1_1q&sig=ACfU3U0Pjq_G7KlUYoUcyh_3CS5hH5P0RA&hl=en&sa=X&ved=2ahUKEwji_vfk_KfnAhUMTcAKHdgLD3IQ6AEwBnoECAoQAQ#v=onepage&q=Hazel O'Dowd PACE trial&f=false

I'm not glad Action for ME is promoting her.
 
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Esther12 said:
I wonder if it would be worth a couple of people trying to do a short paper on the results (and maybe the trouble with getting the results out) to get it in the peer reviewed literature? Could also mention the spin around PACE and the difficulty of getting their prespecified results, and then ask Crawley/O'Dowd if they want their names attached?
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This sounds like a good idea--a case study.
 
Andy said:
You do realise that the tweets that support the claim that AfME are promoting her are from almost 5 years ago? Is there any more recent evidence?
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They still have documents on their website praising O'Dowd's work including her webinar for GP's from 2015.
https://www.s4me.info/threads/open-...it-for-professionals.7629/page-11#post-208874
They used one of her colleagues, Pete Gladwell as advisor on their recently updated Pacing booklet which is still problematic:
https://www.s4me.info/threads/pacin...oklet-revised-and-updated-january-2020.13320/
And it was O'Dowd's clinic that was central to the 'Toolkit for Professionals' that they eventually withdrew last year after pressure.
https://www.s4me.info/threads/open-...-me-about-the-toolkit-for-professionals.7629/

i think it is problematic that AfME still rely on therapists from ME clinics as their advisors on their documents.
 
Trish said:
They still have documents on their website praising O'Dowd's work including her webinar for GP's from 2015.
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Trish said:
They used one of her colleagues, Pete Gladwell as advisor on their recently updated Pacing booklet which is still problematic:
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Trish said:
And it was O'Dowd's clinic that was central to the 'Toolkit for Professionals' that they eventually withdrew last year after pressure.
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So to summarise, two tweets from 2015, one document from 2018, one of her colleagues was a recent advisor to AfME, and a document withdrawn last year was written with/by people working at her clinic.

Trish said:
i think it is problematic that AfME still rely on therapists from ME clinics as their advisors on their documents.
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Sure, absolutely. What I'm trying to encourage is accuracy in any complaint we might make, not to deny that we still see issues with some of AfME's work.
 
Andy said:
You do realise that the tweets that support the claim that AfME are promoting her are from almost 5 years ago? Is there any more recent evidence?
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5 years ago isn't that long, especially if there's been a failure to apologise for the problems of the past. PACE first came out in 2011, and there now seems to be an attempt by some to act as if this is so long ago that it's foolish to care about the problems with it - I fear that acting as if there's some 'best before' date for things like this encourages people to think that they can get away with things if they just avoid acknowledging problems for as long as they can.

There was this post on a 2017 webinar earlier in this thread:

Robert 1973 said:
For those who are unaware, the psychologist Dr Hazel O’Dowd is one of the PACE trial authors who is sponsored by Action for M.E. to give webinars about “CFS/ME”.

From the Action for M.E. 2016-2021 strategy document:

“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.”
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https://www.actionforme.org.uk/uploads/pdfs/2016-2021-strategy.pdf


In 2017 AfME sponsored Dr O’Dowd’s webinar: “Meeting the challenge of CFS/ME”. The webpage seems to have been deleted but I found this in the google cache:

On Thursday 12 January 2017 at 8pm GMT, Dr Hazel O’Dowd, Consultant Clinical Psychologist, will be presenting on “Meeting the Challenge of Chronic Fatigue Syndrome (CFS)/M.E.” Chronic Fatigue Syndrome / M.E. is often a significant challenge for both patients and their GPs. In a recent survey CFS /M.E. was rated in the top three most difficult conditions for GPs to manage.

Expected Learning Outcomes:

1.Gain knowledge to help your confidence in diagnosing CFS/M.E
2. Learn more about the management of CFS/M.E
3. Have a better insight and understanding of treatments available
4. Obtain a more detailed understanding of the services available and how to access them
5. Tips for managing the condition in primary care

This webinar is equivalent to 1 CPD credit.

About the Speaker: Dr Hazel O’Dowd, Consultant Clinical Psychologist

Dr Hazel O’Dowd qualified as a clinical psychologist in 1994. She has been continuously employed by the NHS since qualifying. She has worked in general medicine for 15 years and in the field of CFS/M.E. for 10 years. Dr O’Dowd was appointed as Clinical Champion for CFS/M.E. Services for Avon, Gloucester, Wiltshire and Somerset in 2004. The service at Cossham Hospital is one of 12 specialist centres in England that was funded by the Department of Health in programme of 2004/2005. It is now one of the biggest teams in the country and in a recent trial, demonstrated the best outcomes.

Dr O’Dowd is currently the Deputy Chair of the British Association of CFS/M.E. and the lead for the national conference each year.

This webinar is sponsored by Action for m.e
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https://webcache.googleusercontent....fs-m-e-cme-webinar/+&cd=1&hl=en&ct=clnk&gl=uk
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Action for ME's SEE ME project with O'Dowd still seems to be an ongoing issue too, though it looks like there was a January 2019 update after their "remarkable results" hype: https://www.actionforme.org.uk/living-with-me/managing-work/see-me-project/
 
Esther12 said:
5 years ago isn't that long, especially if there's been a failure to apologise for the problems of the past.
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I think this is the thing - I wouldn't hold my breath for an apology, but unless the person in question has demonstrated that they have changed their minds and learned from past mistakes & ensured that, where appropriate, corrections have been issued then I think it's fair to assume nothing has changed.

Even if the material was written years ago, if it's still being used to inform and influence those making decisions about and treating ME patients then it's still as relevant today as it was years ago.
 
Esther12 said:
5 years ago isn't that long
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It is when you phrase something as currently happening.

Esther12 said:
PACE first came out in 2011, and there now seems to be an attempt by some to act as if this is so long ago that it's foolish to care about the problems with it - I fear that acting as if there's some 'best before' date for things like this encourages people to think that they can get away with things if they just avoid acknowledging problems for as long as they can.
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And at no point have I suggested that there is 'best before' date, again making my point about lack of accuracy of complaints.
 
Esther12 said:
I'm sure that there's a worthwhile paper in this if anyone managed to piece it together.
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I very much doubt that they would grant the necessary permission for us to write it up and submit it to a journal. The onus to do so really is on them. It's their data - and only they can make the necessary guarantees about it as a published trial. However, I don't think there is anything to stop anyone commenting on the results they've posted, is there? (Please correct me if I'm wrong about that.)

To me it seems to confirm that early intervention with exercise therapy is dangerous - and that rest, at least in the early stages of illness, is crucial. But I would say that, wouldn't I! It would mean so much more if they were the ones who published it.
 
Andy said:
It is when you phrase something as currently happening.

And at no point have I suggested that there is 'best before' date, again making my point about lack of accuracy of complaints.
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I'm not sure I understand your point then. Are you saying that I was inaccurate about something?

Past endorsements can still serve as current promotion if they're not actively retracted.

The SEE ME project they did with O'Dowd seems like it's still on ongoing concern. On the page I linked to above it said "The updated version will be shared here as soon as we are able to do so."

I don't know exactly what is happening in Action for ME's offices right this very instance, but Action for ME's current page on treatments still promotes the BACME guides O'Dowd was blogging about for them:

The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website.
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https://www.actionforme.org.uk/health-and-care-professionals/primary-care/treatment-and-management/
 
Lucibee said:
If it is really possible to identify patients from the question: "How many hours work have you missed during the past 7 days due to health problems?" (from WPAI Qs) then I'm amazed!
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Oh, obviously that's because we are magical beings not bound by time and space. After all, most of us are sick because we are absolutely convinced of it because we learned about this dreaded disease called ME many years after being sick. We trenscend all reality like that, even have the ability to be physically deconditioned, a process that takes weeks, even months, of complete bed rest, in a matter of minutes, then reconditioned and back again in a matter of minutes!

We are trolls, after all, magical beings that can be simultaneously too sick to use the Internet, too frail to wear a fitness tracker, but clearly well enough to engage in aerobic physical activity.

We're just like that. We will find those people and... do things... of some kind? I guess that becomes a matter of the dog catching the car because I have no idea what we would even do with that information anyway. Invite them here to talk? I guess that's just about it.
 
A further update.

I have been dealing with one authority and the point of contact there has been really helpful and thanked me for bringing the lack of publication to their attention. It seems that UoB has joint authority and is the one saying that there needs to be guidance from the ICO. In asking for this guidance the UoB quoted an ICO decision saying that due to the 'relatively small geographic and temporal space', results from a paediatric trial could not be released. I asked which decision that was and, as I rather suspected, it was... the decision for the SMILE trial, the decision that was overturned on appeal by, hmm, me.

In any case, the guidance should be received within 14 days, so not as bad as I first thought.
 
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