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

https://twitter.com/user/status/1253039070369984512

 

Excellent! Thank you so much @PhysiosforME

 

You understand she includes us in that description?

It's an important topic where good advice can be useful. This isn't what is meant here. This is the fear leads to ME bit that we'll have to endure for a while.

 

On Tuesday, to follow up from a message I sent on Friday 17th I wrote to the Cochrane Independent Advisory Group for the update to the Exercise review (Chair Hilda Bastian)

Dear Hilda

Following protests from myself and others, and a letter of concern from Forward-ME, https://www.meassociation.org.uk/wp...sition-to-Oxford-Fatigue-Leaflet-20.04.20.pdf Oxford Health NHS Trust have now removed the leaflet on post-COVID fatigue in which they called it CFS/ME and said Graded Exercise and CBT were effective treatments. https://www.oxfordhealth.nhs.uk/publication/coronavirus/

What is the point in updating the Cochrane Exercise review to acknowledge the lack of evidence for Exercise, but doing nothing more to publicize the fact that the review conclusions have changed? Cochrane have designated this a high-profile review, yet the NHS in Oxford at least have completely ignored it. Perhaps if there had been a press release from the Cochrane publicity machine to alert the media to the amendment to a “high-profile” review, this unfortunate evidence-free publication would not have been produced in the first place.

https://twitter.com/user/status/1252313591019188228


Best wishes

Caroline

 

I agree @Sarah94, but introducing Jolene D, the interviewer said that her specialism was health anxiety, previously known as hypochondria!!

 

Glad you like it!

 

We have written to them as well and it has been removed from there as well

 

thanks for flagging - another letter to write!

 

Best of luck with that one!

 

Trial by Error: Oxford Health's Response to My Freedom of Information Request

I asked the Oxford Health NHS Foundation Trust three questions. Yesterday I received the following response. I do not consider the response particularly responsive or enlightening.

 

1. The UK national NICE guidance that must at least include CG53, which is under review.
2. The UK national NICE guidance that cannot possibly be based on any evidence relating to Covid 19.

 

The response says about the pamphlet:

1. In light of concerns expressed by a small group of individuals it has been taken down from trust sites for further review.
   
   Wonder if the group was very vocal too?

 

This response reflects very poorly on the NHS.

Very poorly.

 

[my bold]

The size of a group is irrelevant, it is the group's validity that counts. History must be full of cases where small groups of individuals have been responsible for settings wrongs to right.

 

representing a very large group of patients.