Reply from Nice

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.

 

Yup. Been sneakily hiding my name on here

Twitter is @richardvallee.

 

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.

 

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.

 

It's total disregard. It feels like we are powerless against them. They refuse to listen and know they can get away with it.

 

Just seen on facebook



ETA: off to bed. Busy day tomorrow.

 

I just think it indicates NICE direction of travel.

 

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?

 

In what regard?

 

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.

 

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.

 

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.

 

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.

 

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.

 

And, no surprises, we already follow each other!

 

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.