Reply from Nice

Suffolkres said:
Look what Tilly just found.....http://www.niceconference.org.uk/agenda?fbclid=IwAR3Pc-oUDB_AaQm8QogeTA9pIuZDR5TwOtJrBzd6WCaWyKujEfwL8_7mJlI

NICE
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Organisational Type

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Audience Profile

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Sorry @Suffolkres but how does this relate to this thread? It seems to me to be something that is worth being in a separate thread.
 
Cinders66 said:
I think the issue is NICE are starting from the historical U.K. establishment position where CFS is viewed as a broad umbrella, unknown and controversial, grey area , mind body thing with opposing “views” on it. This isn’t where I would start off. I note they refer to it as a “condition”, I never call my illness a “condition “ who does here ?

Their obvious attempt to set up a semblance of “balance” is either to reflect the above and for the guide to then be formulated, no doubt as some mish mash of both positions and presented as having consulted a wide range of opinion to be fair etc etc or it’s the establishment wanting to essentially keep continuity /status quo but conceeding a bit to the patient/biomedical approach either because they want to genuinely reflect that or to buy us off with the minimum.

I don’t know if expecting more than balance for now from NICE is unreasonable and they did change course it seems in response to pressure so I think the community should be applauded for that.
Can we expect NICE to break free and do anything other than this type of old new for against thing to move forward ?

The problem is I think the views of the BPS are outright wrong so I’m uneasy at them having influence on the way forward for ME as I would be a climate change skeptic like trump sitting on a panel deciding the plan to safeguard the environment. Is a CBT promoter capable of assessing the evidence already in the domain in any other way than to the expected ? Or is it being set up like a court with for and against arguing as predicted to ultimately be decided by the neutrals ?

But beyond writing letters at this stage there’s nothing to do further unless #MEAction respond.
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Considering that this review is only happening because of overwhelming objection from patients, advocates and competent professionals, that the guidelines are unfit for purpose, detached from reality and harmful to many, this is most definitely not the right response. There is no balance to strike here. Overwhelming opposition of this sort does not happen without good reasons and is very exceptional in medicine. This is especially so considering the 2007 guidelines were initially objected to on those very same grounds.

Quite frankly the process is meant to be insulting, but this should not deter anyone. The only tool we have is to expose the poor reasoning and absurd arguments they will have to rely on to justify themselves. But additionally, the onus should be put on them to prove that the 2007 guidelines actually work. They have not done so. Beyond the poor quality unblinded trials with self-reported outcomes, they have a full decade of data to show that it works. That they have not even bothered publishing it says it all.
 
rvallee said:
Considering that this review is only happening because of overwhelming objection from patients, advocates and competent professionals, that the guidelines are unfit for purpose, detached from reality and harmful to many, this is most definitely not the right response. There is no balance to strike here. Overwhelming opposition of this sort does not happen without good reasons and is very exceptional in medicine. This is especially so considering the 2007 guidelines were initially objected to on those very same grounds.

Quite frankly the process is meant to be insulting, but this should not deter anyone. The only tool we have is to expose the poor reasoning and absurd arguments they will have to rely on to justify themselves. But additionally, the onus should be put on them to prove that the 2007 guidelines actually work. They have not done so. Beyond the poor quality unblinded trials with self-reported outcomes, they have a full decade of data to show that it works. That they have not even bothered publishing it says it all.
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This not the adequate response to 10 emails or 2,000. Each email needs careful attention and handling. YES, there's a template, but people have been modifying that, rightly so and that's the aim! To send a BCC email to most people with that response is just... I have no words.
 
EspeMor said:
This not the adequate response to 10 emails or 2,000. Each email needs careful attention and handling. YES, there's a template, but people have been modifying that, rightly so and that's the aim! To send a BCC email to most people with that response is just... I have no words.
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It's total disregard. It feels like we are powerless against them. They refuse to listen and know they can get away with it.
 
Sunshine3 said:
Appointees will not be changed...so surprising! I sent my email using ME Action tool so assume a generic reply going to all. They can ignore us with no consequences whatsoever.

Email below

Thank you for your recent email to the National Institute for Health and Care Excellence (NICE), in which you express concern about the membership of our ME/CFS guideline committee.



It is important that our guideline committees have the experience and expertise to consider the published evidence and to take account of the views of people who receive and who provide care for this condition. Our arrangements for appointing the chair, vice chair and the members of guideline committees are designed to ensure that the opportunity to take part is advertised and that appointments are made on merit.



We are very aware that the causes of ME/CFS and the treatments that should be made available are the subject of debate and many people living with the condition hold strong views on both questions. Because of this, we have worked carefully to ensure that the membership of the committee contains a balance of those who have expressed clear views, together with members who have not so far taken a position on the currently available evidence.



Because of the concerns you and others have expressed, we have reviewed the appointments made so far and we consider that they are appropriate and that the interests the members have declared can be managed using our conflicts of interest policy. We will ensure that the small number of final appointments yet to be made retain the balance referred to earlier.



I hope that you will allow the guideline committee to begin its work and judge it not on the basis of your views of those who sit on it, but by how it interprets the evidence and the way in which it takes account of your perspectives and experience, when you have the opportunity to comment on the draft recommendations.
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I received the same fob of reply tells you that we have the power to do what we want without any consequences it is sutch a shame that they cannot be sued for their gross incompetence.
 
I'm unfamiliar with how such things typically work but, could a open letter be drafted with the support of all the major ME/CFS organizations as well as professionals stating the concerns about the NICE review process? Is that the best way to put these concerns on to the public record? Does there seem to be a shared view of this mess to where we could present a unified front?
 
Jim001 said:
I'm unfamiliar with how such things typically work but, could a open letter be drafted with the support of all the major ME/CFS organizations as well as professionals stating the concerns about the NICE review process? Is that the best way to put these concerns on to the public record? Does there seem to be a shared view of this mess to where we could present a unified front?
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The main ME organizations seem to take the position of countess of marr above, it’s not too bad now let’s get in with it approach. The only groups who’ve carried on campaigning on this are #MEAction and here.
 
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We're not going to get anything better than the Countess of Mar has been able to respond to Sohail Alibhai with (@Binkie4's post above). Standard responses to a large number of emails is only to be expected, it's just the way it's done. To think a government organisation will do otherwise is naive, really, I don't think they would even have the resources to think of doing otherwise.
 
Andy said:
In what regard?
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I am seeing a bigger picture to the NICE replies.
The Government want to limit practical help, treatment and physical management of chronic conditions as it is "too expensive", despite may chronic conditions receiving very little like ME.
They are shifting responsibility to the third sector and private company providers and the NICE team will court them and provide guidelines that assist that agenda.

Algorithms to spot patterns and problems and IAPT and CBT to "resolve" them.
This will round the circle of Governmental responsibility with DWP, NHS and Occupational Health (NHS Health & Work) all in to to deliver their ideology with the safe hands of SW/CG and Sir Simon Stevens at the helm of NHS England ( NB His Keynote Speech at the recent "Wounded Healer" International Conference , imho.....

https://www.healthcareconferencesuk.co.uk/practitioner-health-summit
The International Practitioner Health Summit 2018: The Wounded Healer
Thursday 4 October 2018 — Friday 5 October
30 Euston Square, London
Simon Stevens, Chief Executive, NHS England to give a keynote address****
Aimed at doctors, nurses, pharmacists, allied health practitioners, dentists, counsellors and researchers in the field of practitioner health the 10 Year Anniversary Conference of the NHS Practitioner Health Programme will bring together the academic, clinical and experiential aspects of physician and practitioner health with a particular focus on mental health.
Sir Simon Wessely President of The Royal Society of Medicine will join Professor Clare Gerada MBE Medical Director at NHS PHP to chair the first day the following speakers are confirmed:

There is about as much chance of the new NICE Guideline going against this grain come 2020 as per the last one did.
Is this my conspiracy theory? - yes it is.

Regarding this thread Reply from NICE;
Are they keeping us tied up and occupied whilst all above is actioned? I suspect that's the case.
 
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Suffolkres said:
I am seeing a bigger picture to the NICE replies.
The Government want to limit practical help, treatment and physical management of chronic conditions as it is "too expensive", despite may chronic conditions receiving very little like ME.
They are shifting responsibility to the third sector and private company providers and the NICE team will court them and provide guidelines that assist that agenda.

Algorithms to spot patterns and problems and IAPT and CBT to "resolve" them.
This will round the circle of Governmental responsibility with DWP, NHS and Occupational Health (NHS Health & Work) all in to to deliver their ideology with the safe hands of SW/CG and Sir Simon Stevens at the helm of NHS England ( NB His Keynote Speech at the recent "Wounded Healer" International Conference , imho.....

https://www.healthcareconferencesuk.co.uk/practitioner-health-summit
The International Practitioner Health Summit 2018: The Wounded Healer
Thursday 4 October 2018 — Friday 5 October
30 Euston Square, London
Simon Stevens, Chief Executive, NHS England to give a keynote address****
Aimed at doctors, nurses, pharmacists, allied health practitioners, dentists, counsellors and researchers in the field of practitioner health the 10 Year Anniversary Conference of the NHS Practitioner Health Programme will bring together the academic, clinical and experiential aspects of physician and practitioner health with a particular focus on mental health.
Sir Simon Wessely President of The Royal Society of Medicine will join Professor Clare Gerada MBE Medical Director at NHS PHP to chair the first day the following speakers are confirmed:

There is about as much chance of the new NICE Guideline going against this grain come 2020 as per the last one did.
Is this my conspiracy theory? - yes it is.

Regarding this thread Reply from NICE;
Are they keeping us tied up and occupied whilst all above is actioned? I suspect that's the case.
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And so your original post in this thread is meant to illustrate this theory then? Because I'm afraid I just looked at that original post and had no clue of it's intended relevance to this thread.
 
Andy said:
And so your original post in this thread is meant to illustrate this theory then? Because I'm afraid I just looked at that original post and had no clue of it's intended relevance to this thread.
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Fair enough. I know my thoughts do wonder a tad.... but seeing NICE "reaching out" and courting big pharma etc at a conference next year to me seemed self evident. I cannot see that they will encourage good robust guidelines in the public interest if they are also are following another agenda as an arms length "NON-GOV" organisation but still under the auspices of the Secretary of State and NHS.
 
rvallee said:
That is our only asset. We have no influence on the process. We can only make our objections on the facts known and as transparent as possible. It will largely be ignored during the process, but will be significant later on when accountability can't be deflected anymore. That the process is corrupt and incompetent is already clear.

NICE have to understand the threat that eventually hard questions will be asked about who knew what when and how the hell did such a disastrous display of contempt for the sick happen despite overwhelming objections from patients and competent researchers and in contradiction with research.
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As the next debate in the U.K. should hopefully be proceeding in the next couple of months (for no leadership contest, vote of no confidence or General Election - until we get huge amount of research money agreed and signed on a dotted line), perhaps any U.K. people wanting to write to NICE again, should cc their MP ‘for information’.

Or, when asking MP to support the debate, send a copy of the response received. The MPs need to be making NICE aware that this process is being watched carefully.
 
Well we should mark the day of notsonice conference in our diaries in case things don't improve and we want to do a trip out together (if able)
 
Just for information- we wrote a 4 page non template response to Sir Andrew, posted on 1st Nov. Not even acknowledged until we emailed a few days ago whereupon we received the standard email from the Communications Unit.
We have received focussed responses from Sir Andrew in the past. They are closed down, overwhelmed or both on this one.
Our MP has had copies of the whole lot including the template response. Feeling furious.
 
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