Dr Myhill’s complaint to GMC about PACE authors.

[Barry]

1. Make sure that we are always trying to convert the unconverted. Talk among fellow patients is cheap. Convincing someone outside of this bubble is far more effective (though difficult).

Totally agree. The people I call "the innocently uninformed", of whom there are many, although in many cases perhaps more accurately "the innocently misinformed".

 

[Skycloud]

This is why I think in order for ME activism to succeed we need to:

1. Make sure that we are always trying to convert the unconverted. Talk among fellow patients is cheap. Convincing someone outside of this bubble is far more effective (though difficult).

2. Develop links with healthy allies, who are the people who can show up in person.

Ideally we would have more: I would like to see a expert PR/Lobbying/Media offensive such as Valerie Eliot Smith has proposed. If she didn't get anywhere in trying to unite the ME community in the UK towards that I don't think it'll happen though. We're up against big guns and a big gun of our own would make our struggle much more effective. I'm not getting any younger.

I'm glad to see though that the number of people sending their experience of harms to GMC is rising, and I hope lots more people back her complaint up.

 

[Inara]

If she didn't get anywhere in trying to unite the ME community in the UK towards that I don't think it'll happen though. We're up against big guns and a big gun of our own would make our struggle much more effective.

I think without unison - at least to the external world - it won't work. That's just was history and the present show. Every big agenda worked or works due to unison.
Internally, discussion, fights, different opinions etc. are ok as long as they don't lead to (public) split-ups.

I agree that a professional PR campaign etc. could be very successful.

My impression is, we will have to wait for science to give something like a biomarker. IF one will be found.

 

[Inara]

Does anybody know if it's enough to send my experience to Myhill alone? Does she collect all letters? If I contact Sir Stephenson of GMC directly - as she asks - I surely have to take into account some bureaucratical issues, no? I feel a bit uncomfortable with that.

 

[Jan]

I do think that #ME Action do speak for all of us, and most if not all other groups/charities support what they are doing. If ME Action wanted to fund raise for professional PR support I'm sure most would back them.

 

[Barry]

Does anybody know if it's enough to send my experience to Myhill alone? Does she collect all letters? If I contact Sir Stephenson of GMC directly - as she asks - I surely have to take into account some bureaucratical issues, no? I feel a bit uncomfortable with that.

I obviously don't know, and am not asking, the details, but in a way your discomfort feels indicative of some of the indirect ways the PACE trial has led to stress, at the very least, for many PwME.

 

[Skycloud]

90 patient letters submitted

 

[Barry]

90 patient letters submitted

It's good, but I would think she really needs lots more. There must be so many people.

 

[Keela Too]

I did mine this morning. Going to re-read it later today before sending it.

Agree it would be good to have a flood more of them.

 

[NelliePledge]

It's good, but I would think she really needs lots more. There must be so many people.

I think Dr Ms team are looking for volunteers who are more able to help people who are struggling to write up their story.

 

[NelliePledge]

Does anybody know if it's enough to send my experience to Myhill alone? Does she collect all letters? If I contact Sir Stephenson of GMC directly - as she asks - I surely have to take into account some bureaucratical issues, no? I feel a bit uncomfortable with that.

I would get in touch with Craig Robinson not sure if he’s on here

 

[Keela Too]

Petition

https://www.change.org/p/the-genera...s-complaint-to-the-gmc-about-the-pace-authors

 

[Barry]

Petition

https://www.change.org/p/the-genera...s-complaint-to-the-gmc-about-the-pace-authors

Signed.

 

[NelliePledge]

2000 signatures

 

[NelliePledge]

@Robert 1973 may be worth changing the title to add
and petition
To highlight the petition for those who are interested in supporting this

 

[Sasha]

@Robert 1973 may be worth changing the title to add
and petition
To highlight the petition for those who are interested in supporting this

If you want to draw attention to a petition I suggest starting a new thread in the 'Petition' subforum.

 

[NelliePledge]

Almost 3300 now

 

[NelliePledge]

Update from Craig Robinson on Facebook now 110 letters

 

[Daisymay]

Update from Craig Robinson on Facebook now 110 letters

Gosh I can really relate to that statement, as I'm sure so many of us can. Thanks to the person who said that and to everyone else who has submitted their voice.

 

[Jan]

I wonder how many of us avoid talking about ME with GP's and consultants?