United Kingdom: Petition Change.org: for a new mechanism by which M.E/C.F.S patients can report harms.

https://www.change.org/p/department...-9ba2-06a633f298f3?source_location=topic_page

 

I think this point ...

... needs to be made much more clearly, as a form of harm. At the moment it is lost, on its own, amongst lots of text, and the constant repetition of "harms" means it come across as something distinct and separate from the deterioration of the very symptoms the treatment claims to improve.

Worsening of symptoms being treated often seem to be overlooked as a form of harm, and I fear that might be exactly what will happen here.

 

@John Mac

Would it help if people outside the UK sign this petition?

I think it's time for legal action. Reframing GET with a new name, or just refusing to drop GET, and continue to use it flys against the science as we know and understand it.

How can these health care practitioners say they follow scientific teachings if they refuse to see the mounting evidence before them?

 

It would certainly help but I don't know if it's allowed, perhaps someone outside the UK could try and let us know.

 

Signed ! and I'm from Canada.

 

Signed and no UK resident

 

Have signed and am trying to get some others to sign.

 

Merged thread

Because of concern that clinicians and specialist services will seek to subvert the new ME/CFS NICE guidelines, Sally Callow (MEFoggydog.org and stripylightbulb.com) has set up a petition on change.org, requesting a mechanism is set up so that patients can report harms from GET, CBT and the Lightening Process, or new versions of these interventions:

See https://www.change.org/p/department...t-harms-ab215021-5d66-4f72-9ba2-06a633f298f3?

This seems particularly relevant as we are already seeing new versions of GET such as Graded Activity Treatment and variations on CBT emerging. The petition is aimed at Lord Kamall, Sajid Javid MP (Secretary of State for Health and Social Care), Department of Health and Social Care, and Sally Callow has also emailed National Voices and Healthwatch to ask for their support in campaigning for the creation of a new reporting mechanism

Note: I am able to sign change.org petitions relating to issues from outside the UK, so I assume people from outside the UK can also sign this petition though it specifically relates to a UK matter.

[edited to try to replace the petition link with a shorter form of the address]

 

I should give up on trying to create new threads, I delayed several days before attempting it, searched to see if anyone else had created a thread or posted it in a comment to another thread and still managed to create a duplicate.

 

Not sure whether it will be of any comfort but this also happens to me from time to time, despite using the same efforts as you to find any existing thread or comment, so I'd encourage you to keep posting in the future.

 

This posted today by @Tom Kindlon

https://twitter.com/user/status/1459179812782841858


There doesn't seem to be an equivalent petition on the government petitions site. Might it be worth starting one, or has one already been done before?

And wasn't something mentioned about harms reporting at the round table, or did I dream it?

 

My personal opinion is that one of the weaknesses of this current petition is that it singles out pwME as being the ones to benefit from this proposed reporting system, and it focuses solely on graded exercise therapy. What we actually need is a generic system where anybody, no matter their illness, can report harms from any behavioural 'treatment'. If it was much broader in scope in that way then it would stand a better chance of being successful, either in its present form or on the government petition site.

 

Professor Gillian Leng, NICE chief executive, said something somewhere about perhaps there was a need for it. It might have been obtained with a FOI request?

Also

https://twitter.com/user/status/1451864514534821895

 

Well I've come up with some wording for a potential petition on the government site:

Is it detrimental to have two petitions running simultaneously on different sites? I don't want it do it if affects ME Foggy Dog's petition on Change.org, but I agree with @Andy that we need something more general. Last thing I want to do is tread on toes.

 

I'd hold your fire. Unless I'm going mad, the wording on the petition been edited/amended quite significantly. (Edit: Nope, I'm not going mad.)

The original URL, from the top of this thread, was

Code:

https://www.change.org/p/department-of-health-and-social-care-we-demand-the-creation-of-a-new-mechanism-by-which-m-e-c-f-s-patients-can-report-harms-ab215021-5d66-4f72-9ba2-06a633f298f3

if you use that, it now re-directs to

Code:

https://www.change.org/p/department-of-health-and-social-care-we-demand-the-creation-of-a-new-mechanism-to-report-non-pharmaceutical-treatment-harms

Original text can be seen here, https://web.archive.org/web/2021110...rt-harms-ab215021-5d66-4f72-9ba2-06a633f298f3

New text can be seen here, https://www.change.org/p/department...-to-report-non-pharmaceutical-treatment-harms

 

I'd only ever seen the most recent version.

I'm not convinced that Change.org petitions do anything other than raise awareness amongst those you subsequently share it with (and raise huge profits for Change.org itself - all donations go to them, and not the petitioner - they make it suitably vague). I've tried unsuccessfully many times to sign these petitions, but if I select options to avoid being endlessly spammed, my signature never seems to count. At least with the parliament petitions site, your signature counts once confirmed, and your email address isn't used for anything other than the petition itself.

Both petitions are potentially useful - but for different reasons. Change.org is good for raising awareness, but I'm not convinced they do anything beyond that.

Parliament petitions set strict criteria and require a high bar to be reached, but at least they get considered at that point. I doubt the government pay any attention at all to external petitions, particularly if signatories can come from anywhere in the world.

I also thought it might be better to keep mention of any specific disease completely out of any petition. The more general the better.

Hence why I asked...

Sally made it clear that she would remove her petition if anyone put something similar on the parliament site, and I don't want her to do that.

So I'm somewhat stuck. I don't know what to do.

 

An autistic friend pointed out to me that the Change.org petitions can have their wording amended by the person who started them, and for that reason they wouldn't sign the NICE ME/CFS guideline one for me, although they did support the publication of them in principle.

I think that is why any petition needs to be started by an established disability charity and have a note to the effect that the wording will not be changed while the petition is running.

I agree it requires a more general petition to cover all psychological NHS funded treatments.

 

I'd encourage you to go for it then. Like you I doubt that any change would come from a petition on Change.org, unless it got an overwhelming level of support i.e. millions. The community would be much better served with a broadly worded petition, such as yours, on the parliament site where, presumably, the text can't be subsequently changed (I think it was changed for the better but I don't think it's ethically right to change the text of something that people have already signed).

If we could get to 10k on the parliament site, the response from the government could be quoted in advocacy efforts in the future, which is likely to be a useful thing.

 

It is very common to have overlapping petitions on a single site or on different sites running concurrently.

It can be a source of confusion, but usually one will take off more than the others. The main issue is finding ways of getting a petition shared to as many people as possible. Ideally a successfully petition would be picked up by relevant charities and the media.

I personally think that a general petition on reporting harm from psychological or behavioural interventions is a better way forward than a specific ME and GET/CBT petition that only addresses the more general issues as a subordinate point. I suspect more people will sign a petition that is more clearly on the general issue rather than one presented as specifically on ME/CFS.

The advantage of a UK Parliamentary petition is that if enough people sign the government is committed to a written response after 10,000 signatures and to considering a debate in Parliament after 100,000 signatures. I suspect we might with hard work get 10,000 signatures from the UK, but reaching 100,000 is unlikely.

The disadvantages are that they can only be signed by UK citizens and/or UK residents, whereas such as change.org petitions can be signed internationally. Also Parliamentary petitions are time limited, only open for six months, and will get lost if there is a general election in that six months, whereas such as change.org petitions can be active over several years.