CALL TO ACTION! NICE ARE BETRAYING US!

[Moof]

Should we not keep our powder dry for a bit, and wait to see some preliminary outcomes? I'm worried about making it too easy for patients to be portrayed as hysterical (etc) if we go in before the panel has done or said anything...they're very unlikely to change their minds about the appointments, so I think we need to know exactly what we're challenging before we put too much energy into it. That's my instinct, anyway.

 

[Jackdaw]

I think it’ll be too late then. And we know what we are challenging, a biased panel. If they won’t change their minds on appointments, they won’t change anything further down the line. And maybe i’m being optimistic but the earlier the clamour, the greater the pressure for a fair review. Although I was niave enough to think, with everything, NICE wouldn’t have picked a panel anything like this. But to stay silent now, for fear of being portrayed as hysterical, when there are more than obvious grounds for complaint, feels unwise to me. We shouldn’t be afraid to complain.

 

[Seven7]

is not being hysterical, even the serial killers get the chance to Jury selection to avoid Bias !!!! How come we cannot demand the same courtesy? We have to speak up rationally, organized but the time to do so is now, not before it is too late. And we have to do it SOOOOOO publicly that they will think twice to mess w it again.

 

[andyguitar]

Yes it's a pretty bad outlook. I was fairly hopeful that NICE would be careful as to who they selected for the panel. They clearly dont give a toss about getting to the truth. As to what can be done about it... legally its probably the sort of thing that could be subject to Judicial Review. One of the key points would be that it is irrational to pick people for the panel who have been involved in the now discredited GET and PACE nonsense. Expensive though. Probably need £30k -£100k for a legal challenge like that.

 

[Hajnalka]

https://twitter.com/i/web/status/1056468214522228736

 

[Tally]

Should we not keep our powder dry for a bit, and wait to see some preliminary outcomes? I'm worried about making it too easy for patients to be portrayed as hysterical (etc) if we go in before the panel has done or said anything...they're very unlikely to change their minds about the appointments, so I think we need to know exactly what we're challenging before we put too much energy into it. That's my instinct, anyway.

There is a true story about a girl who was kidnapped and kept for 7 years in a box. She was allowed to leave and walk around free and even visit her family but she never made any attempts to escape because her kidnappers lied to her about consequences if she does. Each time she willingly returned to the box to be locked up and tortured.

Don't be girl in the box.

Don't listen to advice of people who want you to keep quiet whether you should speak up or not.

 

[Countrygirl]

http://www.investinme.org/IiMER-Newslet-1810-02.shtml

IiME comment on the mess that has been created by NICE:

A Continuing Saga of Ineptitude
Comment
After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on doing the right thing once the decision had been made to review the existing guidelines [1].

Yet with their insistence on retaining CBT and GET as recommendations for treatments for ME in the current guidelines whilst new guidelines are developed, which potentially will do damage to patients’ health, then one is left to wonder how genuine NICE really have been.

The correspondence between Invest in ME Research and NICE director Professor Mark Baker [2] should have sent alarm bells to all.

IiMER’s carefully crafted questions elicited responses from Director Baker which really showed the compromised position that NICE continues to retain.

The NICE workshops were held with a PR exercise to demonstrate that they listen to patients’ experiences - and a cathartic release of relief was expressed by some establishment organisations/individuals claiming to represent patients - that now a new beginning was here.
And then the members of the NICE guidelines working group are announced.

And the penny drops!

If NICE is meant to be a political tool for saving money then it is never going to be of any value to people with ME – a realisation that surely came forth from IiMER’s correspondence with NICE prior to the workshops.
In its choices of members for the NICE working group it seems evident that NICE is falling into this trap and continuing to politicise the whole debate around guidelines for ME in the UK.

The farcical situation of retaining existing flawed and harmful guidelines – not from any decision but from influences hidden from view – is now turning into a shambles with members who have been selected for the working group being announced to the public in a drip-feed effect, whilst those who have not been selected are also publicised in similar way...............................

 

[Seven7]

Yes it's a pretty bad outlook. I was fairly hopeful that NICE would be careful as to who they selected for the panel. They clearly dont give a toss about getting to the truth. As to what can be done about it... legally its probably the sort of thing that could be subject to Judicial Review. One of the key points would be that it is irrational to pick people for the panel who have been involved in the now discredited GET and PACE nonsense. Expensive though. Probably need £30k -£100k for a legal challenge like that.

Open the crowd funding to open the legal case and I will work on raising the money!!!!! I am on USA

 

[jesse's mom]

Just show me how to contribute. I am in the US.
Truly horrible news!

 

[Countrygirl]

I see there are two groups on FB inviting people to join them to discuss what action to take.

I think whatever action we do take must be immediate and public using people with influence, although I doubt they will agree to change the membership of the NICE group now.

It is just astonishing that they have chosen to do this when they know that we are watching closely. They clearly have support from the highest quarter and don't care a fig about patients.

 

[Countrygirl]

Carol Monaghan MP in parliament today:


"There is one other sinister aspect of this that I do want to highlight...the issue of children with ME. Now ME in itself is a horrendous enough condition, but some of these families are then being subjected to child protection prosecutions because it's considered that the parents themselves are causing the harm to the children. So they are being threatened with being removed from their parents; social worker involved. So what is a terrible condition affecting them physically in every aspect of their lives also becomes a mentally traumatic condition.

"So really the time is right. We need to get this debated. We need to start putting pressure on both NICE and the medical community to get the treatment right for this condition." - Carol Monaghan, MP

From this afternoon's application for a full House of Commons ME debate.

#MillionsMissing #MEAction #MEactionScotland #ME

 

[Seven7]

From this afternoon's application for a full House of Commons ME debate.

DO you know what they covered? Something about the NICE board?

 

[Countrygirl]

DO you know what they covered? Something about the NICE board?

I only know what is posted above at the moment @Inester7.

 

[Countrygirl]

Here is an article that was written about Dr Gabriel Murphey, colleague of Peter While and now on the NICE review committee, by Margater WIlliams dated 30 Nov 2007.

(She denied patients access to doctors if they refused GET. )


http://www.margaretwilliams.me/2007/coercion-as-cure-response.pdf

 

[Countrygirl]

DO you know what they covered? Something about the NICE board?

Here is the video of her speech

It starts at 14 mins:

https://parliamentlive.tv/event/index/0666480c-4fb5-443f-87bc-e295dabc0e58

 

[justinreilly]

Not thrilled with a charlatan on the NICE ME Committee lying about your disease? Why not rate his BS book One-Star on Amazon? I did, and let me tell you, it feels great!

Amazon USA:
https://www.amazon.com/ABC-Medicall...=1540988226&sr=8-1&keywords=abcs+of+medically

Amazon UK:
https://www.amazon.co.uk/ABC-Medica...d=1540989028&sr=8-1&keywords=abc+of+medically

Amazon Canada:
https://www.amazon.ca/Medically-Une...sr=8-1&keywords=abcs+of+medically+unexplained

Google Books:
https://books.google.com/books?id=D...edically+unexplained+symptoms&sitesec=reviews

My review:

"Anti-Science

"It pains me to say that this book is substantially anti-science. It paints ME/"CFS", and certain other diseases long proven to be organic, as mental disorders. This idea has been disproven time and again in the scientific literature. This is truly unfortunate. This particular brand of charlatanism causes a great amount of iatrogenic morbidity and even mortality.

"For example, from the section on 'CFS'(pp.43-46):
"'t is now clear that the two treatments that have proven efficacy for the management of CFS/ME are CBT and graded-exercise therapy (GET), when carried out by experienced therapists with a good knowledge and understanding of CFS/ME. What is not helpful in terms of recovery, is limiting activities to conserve energy – this limits symptoms in the short term, but will contribute to declining levels of functional ability in the long term.'"

 

[andyguitar]

In my considered opinion the NICE panel is so bad nobody within the ME/CFS community should have anything to do with it. Boycott it. It's a massive stitch up. Hope for the future will come from scientific research. NICE are not interested in science.

 

[Seven7]

In my considered opinion the NICE panel is so bad nobody within the ME/CFS community should have anything to do with it. Boycott it. It's a massive stitch up. Hope for the future will come from scientific research. NICE are not interested in science.

Unfortunately it affects us all internationally if they come up w some crazy crap and doctors are “Sugested to follow” next thing you know, they are locking up people under mental ward!! We need to stop it before it happens, after is too late and will put us right where we have been for te past 30 ears. Time to move forward whatever it takes

 

[Deepwater]

Can you get your MPs to weigh in?

I could try, but my MP is part of the problem rather than part of the solution.

 

[Countrygirl]

In my considered opinion the NICE panel is so bad nobody within the ME/CFS community should have anything to do with it. Boycott it. It's a massive stitch up. Hope for the future will come from scientific research. NICE are not interested in science.

Sadly, we have no choice as our doctors believe it and are guided by it. They will insist that we undergo GET or benefits/insurance or any further medical help is stopped or children taken from their parents. The impact of this will be huge on the whole ME patient population. We HAVE to fight it! It cannot be ignored.