O'Dowd-Crawley early intervention study

And then they'll find another excuse... etc etc etc.

 

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:
https://twitter.com/user/status/615538045807390720


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?):
https://twitter.com/user/status/628529908382347264


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.

 

This sounds like a good idea--a case study.

 

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?

 

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.

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.

 

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:

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/

 

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.

 

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.

 

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.

 

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:

https://www.actionforme.org.uk/health-and-care-professionals/primary-care/treatment-and-management/

 

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.

 

Au contraire.......JOHN SMITH!!!!