Request for patients' stories harmed by GET

This thread has posts merged from several threads

https://twitter.com/user/status/1427988525539110918


Not sure what to make of this. It's hard to believe this is real.

 

If it is real, surely NICE will make the request in some formal way?

 

I was browsing the comments on the online petition (now well over 1500) and some of the comments are actually testimonials, so I would suggest NICE takes a look at them. I'm not on Twitter, so not sure how to get this across to NICE. They may not even be aware of the rapidly growing petition at the moment.

 

May have something to do with this?
https://twitter.com/user/status/1427912055261179907

 

Given that there are no procedures for recording harms, at all, I cannot see how there could be even one case study, let alone 50.

'They' refused to collect any data on worsening, told people to ignore it, so why would they have done any case studies into something they denied the reality of?

ETA - in light of subsequent posts;

what's been asked for are case studies, not personal accounts, I assume they already have hundreds of personal accounts, or at least have easy access to them.

What they are very unlikely to have, for the reasons I outlined above, is any case studies which detail medical harm caused by GET, at all.

 

I think this is legit and urgent. Just been on Phoenix Rising and @countrygirl has posted that she has been asked to collect as many patient accounts of harm by someone ‘from NICE’ (cttee member?) as she can ASAP, today I think. Her post is here : https://forums.phoenixrising.me/thr...e-new-guidelines-tomorrow.85183/#post-2360675

Eta - I don’t know about this, subsequent posts cast a bit more light.

 

Just seen this on Twitter…2.30pm Could be important, it’s from a reliable source. I know we’re all exhausted but maybe it’s worth a shot?

“NICE have asked for at least 50 case studies from people who’ve been harmed by Graded Exercise Therapy. They need them today.”

 

You may be right, I’m surprised by it, certainly and admit I haven’t done any checking of my own. I am concerned that it could be a genuine request and that the timescale appears to be so urgent.
Oh for goodness sake these people!

 

Ikr! I mean, there were patient accounts in the ME Association surveys, that were submitted years ago.

 

Yes, I guess even if it's more an attempt by a patient rep to gather additional evidence than a formal part of what the committee is doing behind the scenes, it could still be important.

 

This is (clearly, to me at least) a case of crossed wires. NICE wouldn't ask for 50 stories by the end of the day! This is for NICE, not from NICE. It is a request from a patient (Tanya Marlow), who is collating stories.

 

Maybe they want to tap the emotional angle? The accounts might be more aimed at parliamentary ministers or the media, the request doesn't say. Because obviously the evidence is all in the original surveys, but individual current stories, produced in response to the sudden news that the removal of GET could be stopped may actually work better for their current needs or demonstrate a deep sense of tragedy and urgency? I'm just making wild guesses and trying to believe the best about NICE, of course.

 

Trying to get my head round this
https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-2

the survey results on treatment are section 2.9.3 Participants’ experience management and treatment of ME/CFS

From the survey

20 out of 26 reports of harm from GET is a small number, even if it’s a large majority of the respondents who did GET.

I can see why this could potentially be raised as an issue

I can’t think straight anymore to remember if there’s other documented harm in the submissions to NICE.

edit - precision of meaning. Eta anyway I know nothing, and didn’t do GET myself so am leaving the subject.

 

Agree, see:
https://twitter.com/user/status/1428001471321284613


This has been shared eagerly in Dutch Facebookgroup, with patients thinking that NICE requested this urgently. Not very happy with this approach.

 

It is frankly an invitation for them to roll out Paul Garner again

 

This has been posted online, on a Facebook ME support group (but not here as far as I know so far - apologies if this is a duplicate. I hope I have posted this is the best place.

Following the NICE guidelines debacle, someone who I know (an ME sufferer) has had a request from a UK Dr (name withheld, please don't speculate publicly for their protection), for a collation of case histories (ideally 50 needed) of people who have suffered damage at the hands of GET. It is important that it it is provable that you deteriorated as a direct result so you would need a/some witnesses as the case history would need to withstand legal scrutiny. I understand that it would be helpful for these case histories to be collected speedily. So far I believe 10 have come forward, and more are still needed.

For example, some children who were mildly ill, were forced to do GET, and, consequently, became paralysed and tube fed. Others, were mild and were working, but GET led to them becoming unemployable.

Please could anyone who wants to list their story then message me on here and I will supply the email address of the person collating them.

 

this appears to have originated here:
https://forums.phoenixrising.me/thr...-prove-that-get-has-harmed-me-patients.85186/

there are a few posts on other threads with similar requests from an ME sufferer Tanya Marlow.

@InitialConditions

eta:
https://www.s4me.info/threads/nice-...ue-17th-august-2021.21897/page-22#post-364615

 

Yep. But I'm pretty sure that is not Tanya Marlow writing there... It's all very confusing and it's not the right approach.

 

I think there has been a request from Dr Myhill (perhaps the Dr in Countrygirl's post), as well as a separate one from Tanya Marlow, and it's all got a bit confusing.

Anyway, while I appreciate the effort, I'm not sure this is a worthwhile use of resources. NICE has already acknowledged harm—if I'm not mistaken, all of the patient surveys included such stories, along with quantitative data. It would be a worthwhile project to collate these stories and perhaps publish them somewhere online to be used into the future, but with regards to the present situation with NICE I am not sure it is helpful.