Request for patients' stories harmed by GET

One of the social media posts I read cited Dr Myhill having done this as part of her evidence package in her complaint to the GMC, but did not actually say that Dr Myhill was the source of the request. Indeed why could she not use the accounts she already has?

 

I was initially concerned by the tone of urgency connected to these requests, based on what Countrygirl had posted on PR, and posted about it in another thread. I think on reflection, that the lack of transparency is a bit worrying. And where is the safeguarding and data protection for any patients (including children) sharing their experiences in response to these requests? On reflection it seems unethical to me as currently being presented.

This is an emotional time for a community which is still processing NICE’s extraordinary decision, and is largely in the dark about what is going on. I agree collating accounts of harm is a good thing, but I don’t think it’s a good time to rush things.

sorry a couple of edits - trying to express myself better with a struggling brain

 

I don't know anything about Tanya Marlow but I assume that she is trying to repost the original request to be helpful in an abbreviated form.

I am sorry that people have instantly speculated on the Dr's name and I do not believe that the guess is correct. Yes, it was on PR but it was posted on a Facebook ME group one of which was ON Dr Myhill's group but it was because there were patients with ME on the group not because it emanated from her. If she wanted to keep her name out of it, that would be a pretty stupid way of going on?

I can appreciate @Trish 's concerns but if someone is interested in submitting something there is an email address that I have left where a person can raise that first.

 

https://twitter.com/user/status/1428058316354297862



Hope this clarifies from whom this request originates.

 

If you look on Twitter for Tanya she is liked with Dr Hng's Friends of ME CFS

 

Thank you @Sly Saint - that clarifies things a bit

 

Whatever it was it's gone.

 

There were half a dozen or so named people on that Cambridge news item last Friday.

 

https://www.s4me.info/threads/request-for-patients-stories-harmed-by-get.21939/

 

NICE has not asked for this.

See my post #471. It is Jenny Wilson who is asking for this.

Editing to add: Now Post #25 in this thread.

 

Yes, I understand now.

 

Without wanting to add more confusion to the already confused on this subject, but I think it has only been posted on Dr Hng's page, and is not a request from Dr Hng herself.

Edited for clarity

 

It seems that she isn't involved here (?) but to state the obvious Dr Myhill should be nowhere near this; she is not a good representative of the community and issues.
(I am a former patient and she has been all over the place lately, claiming all kinds of absurd things including about vaccination.)

 

As these posts have been moved from another thread, the post I am referring to is no longer #471 but is now post #25 in this new thread.

 

Ok, I deleted my post since perhaps incorrect.

 

Yes, this is so. I wasn't a member myself until yesterday so didn't know of the group.

I now understand that requests for accounts of GET damage can be from anywhere in the world since GET has been exported to so many countries.

Also that the stories being put together in a folder to be presented to NICE (now to be 100) will be anonymised - though of course the names will be known by the person putting them together. They will be presented by 2 doctors (whose names need to be kept off the net for their own protection).

Just to repeat and clarify that this is nothing to do with Dr Myhill.

 

Clear as mud?

https://twitter.com/user/status/1428329224709017600


https://twitter.com/user/status/1428329830484004868

 

I'm a bit worried about this. What if giving NICE details of people who have been severely harmed allows them to change the guidance so that it sort of says 'don't do GET in the way that was done to these people' (but do it nice and gently!) I think we need to focus on the fact that there is no good evidence for GET and, even for those not severely harmed, it can still have negative effects and ultimately doesn't work.

 

This is, as far as I can see, an effort to exert some sort of pressure on NICE and their decision to pause. This is not about reopening/revising the evidence base. This is not 'for NICE'. They already have evidence of harm, and acknowledged they had seen such evidence in the guideline.