Advice from 'experts' on post-viral fatigue following Covid-19 (NHS Oxford Health, Science Media Centre, ...)

Trial By Error: My FOI Letter about Oxford's Post-COVID-19 Fatigue Pamphlet

These are my questions:

1. What is the “psychosocial response group,” which is credited on the cover of the pamphlet? I have searched for the term on the site and nothing comes up. How many people are members of this group, and what are their professional qualifications and/or medical specialties? When was this group established, and what is its official mandate? What else has it done?
2. Can you provide a list of the peer-reviewed studies and related scientific documentation used to generate the material in the pamphlet specifically about chronic fatigue syndrome, including risk factors for the illness, diagnostic criteria, management strategies and treatment?

 

Found them!!

 

I wrote (again) to the Cochrane Independent Advisory Group email address. This group, led by Hilda Bastian, will be overseeing an update of the Exercise for CFS review. https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot. I have been calling for a withdrawal of the review, along with many others, for some time. According to Cochrane's own policy, if following the conclusions of a review may result in harm to patients, then it should be withdrawn.

Dear Hilda

Here is a recent example of “following the conclusions of a Cochrane review” with no reference to any shortcomings in the evidence. https://www.oxfordhealth.nhs.uk/wp-content/uploads/2020/03/OH-011.20-Coronavirus-and-fatigue-v2.pdf. They have obviously not read the latest amendment of the review which acknowledged at least to some extent the low quality of the evidence. They have not given any references to any the evidence to support their claim that CBT and GET are effective. Please will you or Cochrane contact Oxford Health Psychosocial Response Team immediately alerting them to the review amendment, and ask them to withdraw their misleading pamphlet?

Best

Caroline

PS I posted to you and Cochrane on Twitter just now as well https://twitter.com/user/status/1251107254679605248

 

Hoping our response should land with them tomorrow

 

Thanks Caroline, and everyone else who is calling them out on this. Just when you think it can’t get any worse....

 

Thank you @PhysiosforME a great piece of work making the important points clearly and concisely.

 

The MEA reports that it has been removed from the website.
https://twitter.com/user/status/1252212941383962624

 

I see 35 references, compared with zero in the leaflet! Well done to the team behind it. MEA reports the leaflet has been taken down now.

 

has anyone saved a copy of the leaflet for reference?

 

Yes, earlier in this thread.

First version at bottom of this post, https://www.s4me.info/threads/oxfor...p-document-coping-with-the-coronavirus.14684/

Second version at bottom of this post, https://www.s4me.info/threads/oxfor...oping-with-the-coronavirus.14684/#post-254232

 

Also there's a copy of version 2 (almost identical to the first version) here:
https://web.archive.org/web/2020041...0/03/OH-011.20-Coronavirus-and-fatigue-v2.pdf

 

Thank you @PhysiosforME!

 

yes I had, and I'm glad to see others did also. Now I'll even be more interested to get the answers to my FOI questions.

 

@PhysiosforME That letter is a thing of beauty! It made my day thanks so much

 

brilliant. Thank you so much @PhysiosforME & everyone involved!


I checked & discovered it's still available via the link from Worcestershire -

https://www.hacw.nhs.uk/covid19/

Any ideas how to get it removed from here too?

 

good catch. I assume then it might still be available all over if it's been copied to other sites.

 

Good thing it was taken down. Horrible timing to push out disinformation when it is critical for the public to trust experts. Especially given the behaviorists being behind the horrible herd immunity strategy.

Destroying the very idea of expertise by promoting ideology in a pandemic is just about the worst possible use of health care resources I can think of. These people never think of the consequences of giving their opinions and beliefs false credibility, that's about the only reliable thing about this school of thought.

 

Note the leaflet is still up at the Worcestershire health and care site:

https://www.hacw.nhs.uk/download.cfm?doc=docm93jijm4n1877.pdf&ver=3608

Edit: x-posted with @dave30th and @Invisible Woman