NICE Statement about graded exercise therapy in the context of COVID-19

And that begs the question - if we can see that, why can't mental health professionals & researchers? Or is it that they won't?

 

Exactly, but I thought I'd be my usual pedantic self and spell out the detail .

 

Sometimes I think we need to spell it out.

We can easily forget that what's obvious to us might not be understood by everyone who reads these threads. Not everyone is familiar with all the shenanigans.

 

Actually I meant to write "usual pedantic self"

 

I vote for the first version - useful!

 

#MEAction
Open letter demands action to safeguard people with ME, not just post-COVID patients
https://www.meaction.net/2020/08/06...patients/?mc_cid=368fd86d93&mc_eid=c1fdea04b1

 

I remember reading on the twitters that this was the reason they gave when they updated the wording of their statement.

 

See, I'm wondering.....

If the YourCovidRecovery site has a caveat in there about you undertaking the exercise therapy at your own risk and the NICE guidelines don't have a similar caveat for ME, does that strengthen the possibility that one day someone could sue for damages caused by exercise therapy as recommended in the guidelines?

 

And just for fun I'll include a link I found in the case anyone wants to one day give justice a go:

https://www.crowdjustice.com/

 

Yes, but I think people harmed by CBT/GET already would have a good case;
"
A parliamentary debate voted unanimously to withdraw Graded Exercise and CBT in January 2019. The UK Government failed to take any action.

Sir Ed Davey MP - Kingston and Surbiton (Clip)

Given the evidence that people are being harmed and the ministers hearing that today that evidence today isn’t there a future possibility that a court could compensate ME sufferers, given we know that evidence, the minister knows that evidence and medical professionals know that evidence."

which is on record, officially.

(see @Adam pwme video https://www.s4me.info/threads/new-video-the-pace-trial-part-2-harm.10616)

 

Sure, @Sly Saint, but that's the politicians. It's also a slightly different argument because it states politicians are aware of the harms but they don't run the health service.

So far NICE and the NHS have been avoiding coming out and saying they are aware that some may be harmed by exercise and, what's more, they can't necessarily tell which patients might be harmed.

The caveat in the covid recovery website demonstrates that the health service is aware of the potential for harm and, possibly because they can't tell who might be harmed, is pushing responsibility for taking that risk back on to patients.

In the case of ME patients there is no warning that exercise may harm. The precedent of warning covid patients demonstrates the health service is aware of the potential for harm and is therefore putting ME patients at risk.

The question of liability /responsibility of harms caused by the treatment opens several cans of worms, I think.

1. If the health service is recommending a treatment then it should be as aware of the safety record as well as the efficacy of that treatment. It should be capable of assessing the quality of the evidence and where the evidence is insufficient doing something about that.

2. If the healthcare service isn't giving sufficient information so the patient can give informed consent then that's a clear failing.

3. If that information is withheld from a particular patient group because of their diagnosis then that's discrimination.

4. It is up to the healthcare service to take all reasonable precautions when treating patients - the staff should be suitably qualified etc., the treatment properly administered & so on.

It is up to healthcare professionals to discuss and help the patient decide on an appropriate course of treatment for them. If the health care professional recommends a treatment that is not appropriate for the patient then that is a failing on the part of that professional & their employer.

In short, it strikes me that the health service itself has opened the door for possible liability here.

 

Has it been posted that this message (i.e. on the NICE website) has been deleted?

 

They've done their "delete original and re-post with different file name" trick. It doesn't look like any text has changed but it can now be found here, https://www.nice.org.uk/guidance/gid-ng10091/documents/statement

 

Thanks. I had gone by this ME Research UK page:

https://www.meresearch.org.uk/management-of-post-covid-19-fatigue/

 

As I was in an emailing mode, I've sent MERUK an email to let them know of the new home of the statement.

 

Hi @dave30th , as noted a couple of posts above this the link to the statement has changed, highlighting it in case you might want to amend your article appropriately?

 

This link:

https://www.nice.org.uk/guidance/gid-ng10091/documents/statement

is interesting in that when I archive it it acts as usual and gives me the 'done' box but when I try to access the new highlighted link for the archived version it tells me there is no such link. I tried a number of times with the same lack of success so I then took a screen shot on my computer and that too came up blank.

Maybe there is a very innocent explanation for this that I'm not aware of but as this is public information I find this very fishy.

 

Both seem to work fine for me.

Internet archive, https://web.archive.org/web/2020081...g.uk/guidance/gid-ng10091/documents/statement

and screenshot