Petition: Don't let vested interests perpetuate harmful treatments for ME/CFS!

"
Dirty tricks force NICE to cancel launch of new guidelines

Mark Harper
Cambridge, ENG, United Kingdom
17 Aug 2021 —

NICE has today announced that it will 'pause' the new guidelines and try to get the support of "professionals and the NHS" https://tinyurl.com/jc2kjdt9

The GET/CBT psychologists have been working hard in the shadows and now they have won a victory. If we don't fight, they will succeed in perpetuating their baseless theories and snake-oil 'treatments'. That will mean continued gaslighting ("hysterical", "hypochondriac" are just two of the epithets that have been thrown at us) and being subjected to harmful treatment.

It's more important than ever to fight this. Please share this petition! We will only be heard if we shout!"

original petition page:
https://www.change.org/p/national-i...erail-the-review-of-nice-guidelines-on-me-cfs

update page
https://www.change.org/p/national-i...eview-of-nice-guidelines-on-me-cfs/u/29474574

eta: posted this yesterday as I was a little bit angry about the news re the guidelines.

eta2:
please consider signing the new petition set up by #MEAction
https://www.change.org/p/the-nation...-the-nice-me-cfs-guideline-now?redirect=false

 

608

 

I signed and commented; not sure the value but oh well.

 

I'm not sure what the petition is for, apart from venting. It doesn't have a goal like e.g. #ReleaseTheGuidelines based on clear arguments like it's not in patients interest and against NICE procedure to do this, and it was forced from outside against scientific analysis. What does it want to achieve?

EDIT: My bad, I thought I was looking at a new petition, not an update on an existing one. (See post #6 below)

 

I think it shows patients are in favour of the draft guidelines as they saw them, which shows that it is not a small minority of patients opposing GET and 'CBT for CFS'. I don't expect every patient to have the depth of knowledge we have on the forum, and you also need to take into account the petition was drawn up before NICE actually announced it was going to 'pause' publication of the guideline, so actually pre-empted what most of us weren't prepared for.

So they are really just asking for you to vote that the final guidelines are published (as is, without further amendments).

 

Ah, yes, thanks @Simbindi , I see I was looking at a "petition update" page, which by itself isn't very persuasive. I thought it was a second one, I already signed this one yesterday.

Original page:
Petition · Don't let vested interests perpetuate harmful treatments for ME/CFS! · Change.org

Update page:
Petition update · Dirty tricks force NICE to cancel launch of new guidelines · Change.org

 

now at 2136

 

can someone let the Long covid community know about this

 

The local Cambridge group that set up this petition a couple of weeks ago were certainly more prescient than I initially realised. Their prognostications of doom have come true.

Here is a Cambridge local news article from a week ago

https://www.cambridge-news.co.uk/news/cambridge-news/cambridge-me-patients-dirty-tricks-21290047

 

https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-61#post-364025

 

Certainly not a week to be an S4ME moderator trying to keep posts on thread and managing many overlapping, diverging or converging threads, though don’t let this put anyone off volunteering.

Here is info on the 2021 elections and forum volunteering options:
https://www.s4me.info/threads/s4me-management-committee-election-2021.21659/#post-364258

 

I can't help wonder if someone in this group maybe knew someone who new someone, to have gained this insight so early. Was it all simply sharp perceptions? Or was there an informed ear to the right bit of ground? If so then would it be worth approaching this group, to see if any insights as to who might have been leant on by who?

 

other articles by Dr Mark Harper who set up the petition:

ME battle ‘must not be repeated with long Covid’, says chair of Cambridge support group

https://www.cambridgeindependent.co...-repeated-with-long-covid-says-chair-9198471/

more personal story
https://www.cambridge-news.co.uk/news/health/me-cfs-personal-story-20562798

 

https://cambridgeme.org.uk/contact/

eta:
I have contacted them

 

2930

 

3011
night night

 

Never been a big fan of petitions, however I have signed.

 

I don’t like the way this petition centres its argument so much around the psychological “all in your head”. If ME was shown to be psychogenic and the therapies worked I would bite their hand off to do them until I was well.

(As we know the key issue re NICE is that the therapies offered by the NHS are supported by (very) low quality evidence that demonstrates no improvement beyond what might be from placebo and spontaneous improvement)

Signed despite reservations.

 

to facilitate sharing (thanks @Tom Kindlon )

https://twitter.com/user/status/1427667920453242884

 

Petition update
Petition passes 6,000 signatures

Mark Harper
Cambridge, ENG, United Kingdom
20 Aug 2021 —

I've emailed the NICE committee as follows:

Dear committee members,

The petition from our local Cambridge group now has over 6,000 signatures. This petition, urging you not to be deflected from publishing, will I hope give you a sense of the strength of feeling among sufferers from ME/CFS.

For decades we have been maltreated and traduced. We have been looking forward to the new guidelines as a huge step towards being taken seriously by the health profession and obtaining decent, evidence-based treatment. It is heart-breaking to have this lifeline snatched away from us at the very last minute.

Please do not allow yourselves to be bullied into submission by vested interests in the medical establishment! These people are careless of the evidence and, it seems, of the health and well-being of patients.

Publish!

(6398)