• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

@NICEgetinvolved has asked for patient concerns to be logged

Keela Too

Sally Burch
Messages
900
Location
N.Ireland

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
they do realise there are 15,000 signatures on a petition o_O
have they read any of the comments?

eta: and an FOI from David Tuller, not to mention letters from CS?

I think this tweet was an invitation to log our problems with "the process". I'm going to send an email tomorrow. Just because they asked for one. :) But yes I agree they SHOULD KNOW!
 

Molly98

Senior Member
Messages
576
I think this tweet was an invitation to log our problems with "the process". I'm going to send an email tomorrow. Just because they asked for one. :) But yes I agree they SHOULD KNOW!

If people do send emails, please take a photo of email and also tweet it to the twitter thread above if you have twitter. Sometimes this email us your concern can be a way of trying to show the public you care, while stopping our concerns and complaints from being put out there in the public arena where media and public can view them. We need this to stay public. We are probably only getting a response because it is in the public sphere.

Keep it as public as possible.

@Keela Too you are doing a brilliant job :thumbsup::thumbsup::thumbsup:
 
Messages
2,125
Messages
78
I wrote to NICE this morning.

Feeling bit emotionally wiped (why does sticking up for us all do this to me.. ) so I will share my letter in a bit. Perhaps see what sort of response I get.
well done Sally. I have ben writing to them over the last couple of weeks trying to get info from them which isnt on the website. I noticed that they didnt make a distinction as to the aetiology of ME but said some of the guigeline group thought neurological as per WHO but others thought not. Text stopped there so managed to get a statement from them saying that they do not make any comment on the cause of ME and doing this is outside of their remit which is to give guidelines on treatments etc.
They have also not published any minutes from old meetings but they are getting thise sorted and will put them on the site. Might not be any use but may provide info on how previous discussions went and what majority were in favour of WHO support.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
I put this on the MEA thread too:

"I'll put up the response soon, but it may interest folk to know that my MP asked a question or two on my behalf, and apparently there were no PACE Trial authors amongst the "topic experts" consulted for CG53. "
 
Messages
2,125
I put this on the MEA thread too:

"I'll put up the response soon, but it may interest folk to know that my MP asked a question or two on my behalf, and apparently there were no PACE Trial authors amongst the "topic experts" consulted for CG53. "
as per my post here: http://forums.phoenixrising.me/index.php?posts/888191/

Something else has occurred to me today on this, should NICE reply come back with a 'computer says no'.
As per my earlier post (ie the declaration of conflicts of interest form);
see
"interests involving payment or financial inducement or any reputational interest related to academia that may be affected by the matters under discussion".
"I am aware that failure to declare relevant interests may result in an advisory committee member being required to stand down"

Something along the lines that as they will not reveal the names of the topic experts could they at least:

Reassure the patient community by confirming that

the authors of the FITNET trial and their associates, or any of the authors or associates of the research papers cited by NICE in support of retaining the current guidelines are NOT topic experts as clearly there are/would be substantial conflict of interests.

any chance your MP could find out?
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
@slysaint My head is currently spinning from all that has happened in the last few days (inc the sharing of the interview I did for NVTV) so give me a moment to think, but this might be a possiblity. Although I'm wondering does it have to go through an MP, perhaps just ask at that email address above and see what response comes back?