CALL TO ACTION! NICE ARE BETRAYING US!

Countrygirl

Senior Member
Messages
5,006
Likes
26,003
Location
UK
As you know the UK's NICE guidelines are in process of being reviewed. This is important for us all as their influence is global.

They are in the process of completing their selection of committee members who will determine the advice that is to be given to clinicians and other professionals about our treatment and nature of the illness.

Last week we heard that Dr William Weir, Dr Nigel Speight and Professor Hooper's applications to be part of the committee were rejected. These three are the best doctors we have and oppose PACE and are very supportive of patients.

I have just heard that Dr Charles Shepherd's (Medical advisor to the MEA) application to join has also been rejected.

Today, this piece of information has appeared in my FB newsfeed:

The Real M.E.
October 25 at 12:51 PM ·
Alison, one of the most diligent researchers on several ME pages has just informed us that latest update of the NICE Guideline committee includes Gabrielle Murphy, one of the authors of the PACE trial and Chris Burton, an advocate of the psychosomatic model who has worked with Per Fink... So that's four professionals with a vested interest in the disproven status quo. This whole thing is a joke.
We are being 'stitched up'!!!!!

So, time to mobilise the forces and ACT UP! in whatever way we can. :mad::hug:
 

Countrygirl

Senior Member
Messages
5,006
Likes
26,003
Location
UK
It's bloody infuriating, isn't it. I'm not really sure what to do, though!
AS I am lying here in bed, neither to do I @Moof. The blighters who have been abusing us for decades in order to feather their own nests have so much power. They just have to lift the phone or send a threatening letter to get people in line when they try to support us and get the truth 'out there'. (Even I had such a call some years ago when I was organising lectures in influential places and was warned via a phone call by 'an intermediary' that 'powerful people will do you harm' if you don't stop. Sir Prof SW sent one such letter to a friend of mine who was working on our behalf and when my friend capitulated in a panic at the threat of legal action he was then bribed with an honorary fellowship as SW's academic establishment.)

I am prepared to chain you to some railings outside Downing Street though @Moof if you're game ............unless you can find where NICE meet. :hug::cool:

It is clear where this is heading again. :ill::aghhh:
 

Moof

Senior Member
Messages
778
Likes
2,199
Location
UK
The one thing that cheers me up is the research coming out of the US, Norway, Australia and other countries. As soon as we have a diagnostic test, some of this crap will have to stop. I almost feel like ignoring NICE and letting them make fools of themselves! The UK seems particularly adept at carrying through catastrophic decisions, even though they know how damaging they are and how much every other country is laughing and shaking their heads...

The main problem with doing that is that it puts children and young people at risk – but the ME organisations and social media can mitigate it to some extent. The first thing most people do when diagnosed with something new is to look it up online, and it doesn't take long to pick up the activism threads. So, whilst it's really bad news that NICE is being taken along this path, it may not be as damaging as it seems at first view. (I know, I know, I'm a ridiculous optimist!! :rofl:)
 

SilverbladeTE

Senior Member
Messages
3,043
Likes
3,742
Location
Somewhere near Glasgow, Scotland
of course its a stitch up
every scandal in the UK that really involves the powerful...is covered up
note when a Mafia expert says that the UK is the world's most corrupt country, people should really take note, take to the streets and like, clean up the system

https://www.independent.co.uk/news/...tain-corrupt-mafia-hay-festival-a7054851.html

Stop thinking that facts, reason, Science, compassion or even the ballot box will change things, BECAUSE THEY WILL NOT. THEY NEVER HAVE
look how long those let contaminated blood be used in the UK. when they KNEW it was contaminated
how many other scandals do I need to go on about?
Asbestos
numerous pesticide scandals
numerous drug scandals
cocaine found in Westminster toilets
Mustard gas dumped in places all over the country and in the Irish Sea
Sellafield
WPC Yvonne Fletcher's shooting
Lockerbie
The Irish Troubles
etc ad infinitum

They evade every crime
 
Last edited by a moderator:

Countrygirl

Senior Member
Messages
5,006
Likes
26,003
Location
UK
More on the 'stitch up' by NICE:


  1. [*] Pinned Tweet
    Dr Keith Geraghty‏@keithgeraghty
    6h6 hours ago
    More
    My focus is research - but this review panel is so biased I am just listing some of those biases; its up to patients and patient groups to take this information to NICE and ask for new members and a rethink.




    [*]
    Dr Keith Geraghty‏@keithgeraghty
    6h6 hours ago
    More
    Bristol Joanne Bond-Kendall (runs FITNET CBT-GET trial); Dr G Murphy (ran PACE CBT-GET trial); Dr Chris Burton sees CFS as a medically unexplained symptom to be treated with CBT, wrote paper with PACE author Sharpe. - A total stitch up of the ME/CFS review panel by @NICEcomms




    [*]
    Dr Keith Geraghty‏@keithgeraghty
    6h6 hours ago
    More
    So, NICE ME/CFS review panel, we have 1 dr. from PACE trial, 1 physio who is running Esther Crawley's FITNET & MAGENTA trials, 2 x from staunch Liverpool CBT-GET promotion centre, 1 dr GP who sees CFS as medically unexplained symptom CBT promoted - TOTAL CBT Promotion BIAS !

    15 replies63 retweets81 likes


    [*]
    Dr Keith Geraghty‏@keithgeraghty
    8h8 hours ago
    More
    It might be a good idea to put together a dossier on the views of NICE review panel in terms of 1.causes of ME/CFS 2.preferred treatment..
 

Countrygirl

Senior Member
Messages
5,006
Likes
26,003
Location
UK
We need some co-ordinated action as this cannot be allowed to stand! It is outrageous bias!

As a first step, could David Tuller round up his list of academic and clinical signatories again perhaps and express our dismay at their betrayal of the patients?

We need a lawyer..........and a damned good one!
 

Deepwater

Senior Member
Messages
208
Likes
1,018
We need some co-ordinated action as this cannot be allowed to stand! It is outrageous bias!

As a first step, could David Tuller round up his list of academic and clinical signatories again perhaps and express our dismay at their betrayal of the patients?

We need a lawyer..........and a damned good one!
I’m prepared to help in any way I can- although that won’t be much.

I feared this from the outset. These people are shameless, ruthless and wholly in control. I really wish I believed in Hell, because getting them to even stop their abuse in this world, let alone pay for it, would be a Herculean task if we were well.

I am prepared to donate money for legal action, help edit any pieces bring written for publicity, chain myself to railings in my nearest city, whatever is needed. These guys won’t stop until they’re pushed into the sea (metaphorically, I hasten to add, in case they might think of misusing this post as evidence of death threats).

My understanding is that NICE have turned down patient advocates on the grounds that their preformed opinions constitute a COI, so they cannot easily justify ignoring the preformed opinions and bias of the BPS crowd - they will have a rationale but it will be weak and very obviously biased. That is a real vulnerability we can challenge. For success, we somehow have to make ourselves more awkward than SW and friends to oppose.
Sociopaths there will always be, but the moral cowardice of those who succumb to their threats and blandishments sickens me.
Rant over.
 

Deepwater

Senior Member
Messages
208
Likes
1,018
Just noticed this thread does not seem to be showing up in the lists right now. Is this just a blip? Hopefully? It’s a pretty urgent topic.
 

Countrygirl

Senior Member
Messages
5,006
Likes
26,003
Location
UK
One of the patient community has designed this graphic to illustrate the dominance of the BPS crowd who are reviewing ME for NICE.

It's enough to make you weep! It is so brazen, even though they know they are being watched closely by the patient community who have been so badly treated by the very people they are appointing.

 

Jackdaw

Senior Member
Messages
127
Likes
438
Location
UK
Yes. Please can someone start a petition on this! It’s all very well saying it is predictable but we should still make it public that this isn’t ok. And then it’s something all the MP’s who spoke at the debate can refer to. We are finally being listened to in the corridors of power. Make a noise! Not again, not this biased anti science stitch up again. Enough! (I’m too ill to do anything but sign and share. Although my bed is on wheels!)