NICE are NOT going to publish the new guidelines tomorrow

Countrygirl

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NICE has put up a notice to say they are NOT going to publish the new guidelines as arranged as medical professionals who treat ME patients object to them. :cry::bang-head::bang-head:

ttps://www.nice.org.uk/news/article/nice-pauses-publication-of-updated-guideline-on-diagnosis-and-management-of-me-cfs

NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

17 August 2021

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.
NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
 

bertiedog

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And so the awful history of ME/CFS in this country goes on .....and on. What is it going to take for the NHS and their doctors/Consultants to get their brains into gear and to actually READ all the EVIDENCE of ME being a physical illness.

I had hoped that they would learn from Long Covid but resistance to that being physical and not psychological has been building up over the months in the UK.

There are many excellent researchers around these days who regularly post You Tube videos explaining the findings from their published papers so if the UK medical profession don't want to read their findings, couldn't they at least find time to watch some of the videos!

Pam
 

Abrin

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I am honestly trying not to cry. I got my hopes up and really thought that we were at a tipping point now that Long Covid is in the picture and things might finally change. For decades now I've been to timid to even hope at all but I really thought it would be different this time.

Looks like I've severely underestimated how far medical professionals will go to protect their own egos.
 

Hip

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I am always suspicious that the disability insurance industry may be trying to pull some strings here.

The disability insurance industry can save billions by trying to cast ME/CFS and long COVID as "all in the mind" psychologically-caused conditions, as these insurance companies are not obliged to pay long-term disability support to psychologically-caused illnesses.

Long COVID will likely turn out to be an extremely expensive nightmare for the disability insurance industry, because if all these long COVID patients require disability support for the rest of their lives, it will drain billions from the profits of these insurance companies.

We have already seen (in this thread) how earlier this year, the disability insurance industry brought in Prof Michael Sharpe, to try to cast long COVID as underpinned by psychological or psychosocial factors. This suggests the insurance industry want to wangle it so that they do not have to pay disability support to long COVID patients.

Professor Sharpe is a long-time paid consultant for disability insurance companies, which is a huge conflict of interest.
 
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It's disgraceful! Really disgusting. I've been on twitter for the last 2 hours consoling people and reeling from the stench of it all.

The games these people will play to keep there charade going.

As the mrna vaccine Inventor said "medicine changes one funeral at a time." It's just terrible this also applies to those behind the nice guidelines delays.
 
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Invest in ME made a statement:

"The ominous statement - "However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need." indicates that more manipulation is going on behind the scenes from an establishment that has for years done anything but provide the care and help that ME/CFS patients deserve.

This is gross incompetence by NICE and probably background manipulation from others.

It deserves a full scale inquiry into the role of NICE and those who are really controlling the agenda with regard to this disease."
https://www.investinme.org/IIMER-Statement-20210817-1.shtml

Considering that the guidelines have first been postponed for half a year, then now suddenly "paused" -1 day before the publification date, with no new date set, this scandal really need public scrutiny.

Who raised which issues?
Who exactly are the shareholders?
 

nerd

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How does it serve ME patients' interests when the guidelines aren't published, regardless of who is going to implement them? At least, if they were published, patients would have legal options to defend themselves from malpractice. It seems like they allow others to dictate them what to recommend, regardless of objective scientific consensus. This is not acceptable. What is the basis for NICE to go this way? What is the principle that tells them that NHS has to follow?
 

Countrygirl

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Do we know which "medical professionals" object and for what reason? I'm confused.
For one, Esther Crawley and the Royal College of Paediatrics who were quoted on the SMC's site:

Expert reaction to the news that NICE have paused the publication of the updated guideline on ME/CFS

The National Institute for Health and Care Excellence (NICE) have announced today that they have decided to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

The Royal College of Paediatrics and Child Health (RCPCH), said:

“We are very pleased that this process has been paused and we look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care.”
 
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Whoever MichaelS is commenting on the times article which says they dropped CBT and get from the guidelines meant to be published today - well that person can only be one of a few it seems. He immediately snipes @Jonathan Edwards and openly attacks him in the comments.

It's all very fishy. I cannot find a link I think it might be pay walled. Although apparently there are plugins that can get you round that!
 

Countrygirl

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Omg @Countrygirl that really stinks to high heaven!
It is totally shocking! There is also more to come. ;) The BPS cabal are determined to squash us in whatever way is necessary to keep their positions and empires. They clearly have no care of our welfare if it threatens their careers or powerbase.

I am too bushed to write much about it at the moment, but I had a call from someone on NICE this afternoon to say we must round up case histories of those who have suffered as a result of GET. Fast!

We need case histories of those who have been harmed by GET and able to prove it. For example, if the person was mild/moderate before GET and ended up with a feeding tube following GET. This can be children or adults and from any country. We have a few but we need about 50.

Also, people who were working who, as a result of GET, could no longer sustain employment.

Also, we need those who took part in PACE and who deteriorated as a result to send us their case histories.

Please pass the message on. It can be people from any country.

Please PM me if you know of anyone.

Thanks!
 

Hip

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Guardian article: UK health watchdog delays new ME guidance in therapy row

The National Institute for Health and Care Excellence (Nice) has withdrawn long-awaited landmark guidance on ME hours before its planned publication amid a backlash from medical groups.

Charities dismayed as move to stop recommending graded exercise therapy is opposed by some medical groups