Invisible Woman
Senior Member (Voting Rights)
And that begs the question - if we can see that, why can't mental health professionals & researchers? Or is it that they won't?
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
NICE Statement about graded exercise therapy in the context of COVID-19
- Thread starter InitialConditions
- Start date
And that begs the question - if we can see that, why can't mental health professionals & researchers? Or is it that they won't?
Barry
Senior Member (Voting Rights)
Exactly, but I thought I'd be my usual pedantic self and spell out the detail
.
Last edited:
Invisible Woman
Senior Member (Voting Rights)
Exactly, but I thought I'd be my useful 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.
Barry
Senior Member (Voting Rights)
Actually I meant to write "usual pedantic self"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.
Invisible Woman
Senior Member (Voting Rights)
Sly Saint
Senior Member (Voting Rights)
#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
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
At first I thought this argument in the letter was a good one:
But on further thought, the logic doesn't work.
NICE can simply say the reason they say not to assume GET is right for post Covid is that it hasn't been researched for that yet.
They can say the current guideline for ME stands because it was based on research, and they haven't completed their analysis of the latest research on GET for ME so they can't withdraw it for ME.
We note that NICE has now put out a short statement under the title ‘interim findings’ clarifying that the 2007 recommendation of graded exercise therapy (GET) for people with mild and moderate ME should not be assumed to apply to people with post-COVID fatigue.
We are relieved that patients experiencing post-COVID symptoms will not initially be subject to the same harmful recommendation from NICE as people with ME have been for the last 13 years.
We would like to know on what evidence base you decided to make this statement. At present, we can only be led to assume that you have made this statement based upon the harm that people with ME have experienced, therefore we can see no reason to withhold a similar warning relating to ME itself.
We are relieved that patients experiencing post-COVID symptoms will not initially be subject to the same harmful recommendation from NICE as people with ME have been for the last 13 years.
We would like to know on what evidence base you decided to make this statement. At present, we can only be led to assume that you have made this statement based upon the harm that people with ME have experienced, therefore we can see no reason to withhold a similar warning relating to ME itself.
But on further thought, the logic doesn't work.
NICE can simply say the reason they say not to assume GET is right for post Covid is that it hasn't been researched for that yet.
They can say the current guideline for ME stands because it was based on research, and they haven't completed their analysis of the latest research on GET for ME so they can't withdraw it for ME.
wigglethemouse
Senior Member (Voting Rights)
I remember reading on the twitters that this was the reason they gave when they updated the wording of their statement.
Invisible Woman
Senior Member (Voting Rights)
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?
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?
Snowdrop
Senior Member (Voting Rights)
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/
Sly Saint
Senior Member (Voting Rights)
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)
Invisible Woman
Senior Member (Voting Rights)
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.
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.
Last edited:
Dolphin
Senior Member (Voting Rights)
Has it been posted that this message (i.e. on the NICE website) has been deleted?
Andy
Retired committee member
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
Dolphin
Senior Member (Voting Rights)
Thanks. I had gone by this ME Research UK page:
https://www.meresearch.org.uk/management-of-post-covid-19-fatigue/
It’s possible to put in redirects when you make changes like that. I can see why they tidied it as it was an odd file name but sending your website users scrabbling round to find the replacement is not good practice.
Andy
Retired committee member
As I was in an emailing mode, I've sent MERUK an email to let them know of the new home of the statement.
Snowdrop
Senior Member (Voting Rights)
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.
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.
Andy
Retired committee member
Both seem to work fine for me.
Internet archive, https://web.archive.org/web/2020081...g.uk/guidance/gid-ng10091/documents/statement
and screenshot
