NICE are NOT going to publish the new guidelines tomorrow

[Countrygirl]

https://www.bbc.co.uk/news/health-5...fK8S6vKddc-mR9rzWRSffK45TQnQu7tCP497e5f6ZqNO8

Outrage at chronic fatigue syndrome advice update pause

Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

"Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

"We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication."

 

[hapl808]

"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

Yep, that's the problem.

All they need is some doctors to say, "Hey, I forced my patients to do this and now they're doing great and stopped bitching about crushing fatigue and they haven't had to see me in years." (Because they all went to the 28th doctor to see if they got better care.)

The same way alternative practitioners often claim sky-high success rates with zero evidence (and they rightfully dismiss them), but these people probably claim great anecdotal success rates for GET/CBT with no evidence (yet are believed because they went to the right schools and tea parties and are pushing an approved narrative).

I realized recently that not one doctor I've ever seen made an effort to follow up weeks or months later if I stopped seeing them. The closest they've come is a doctor who damaged me badly with certain testing has a service that tries to scare up some new business every few years by semi cold calling previous patients who stopped seeing him to try to schedule appointments.

None of them care about their patients or helping them, they care about their outsized egos and never admitting failure no matter what the cost (obviously the cost to their patients - no cost to them).

I expect little to change, but I do say a nightly prayer that each one of those physicians gets severe ME/CFS after pushing through GET and spends the rest of their lives regretting their behavior and apologizing to the patients whose lives they destroyed.

Gives me a bit of pleasure with my evening cup of herbal tea.

 

[hapl808]

I had numerous doctors recommend 'pushing through' and NSAIDs and told me there was no risk of causing my situation to get worse from that. I was probably 40%-50% hummingbird back then. After pushing through a few crashes over the next several years I'm now around 10%-15%. Quite a different quality of life. Luckily for those doctors, they managed to find other patients to fill up my slots, so no harm no foul other than destroying another life.

 

[Art Vandelay]

For those of you in the UK, please email your Member of Parliament about this if you can.

NICE have shown that they bow to political pressure, so it's time for us to stand up to the BPS cabal.

Petition here:

Don't let vested interests perpetuate harmful treatments for ME/CFS!

 

[Marylib]

My all time fave from my long time fave, Invest in ME Research Charity - "What a debacle!"
https://www.investinme.org/IIMER-St...ya1Uk3j2yDaqyhP-I1CmqJE#.YRvpvPKfCqU.facebook

 

[Marylib]

They switch gears - the bio/social/psych crew always does. They have 'chronic fatigue' and Long Covid as their perpetual cash cow. This is why I hope you Americans and long covid people can understand what has been going on. If you don't, please ask. Ask what the PACE trial is. Ask what GET stands for. Don't fall for it. There is a reason people don't like to see the words chronic fatigue syndrome - it's an invitation to these guys. I don't care what you call the illness, but at least be aware of the reasons and the history. Am happy to provide a tutorial.

 

[bertiedog]

Time to defund the NHS, it doesn't work and it apparently it never can

My son's best friend is currently dying because of gross incompetence by a couple of doctors in the NHS. He is just 48.

Pam

 

[bertiedog]

My son's best friend is currently dying because of gross incompetence by a couple of doctors in the NHS. He is just 48.

I am so sad to say that I heard a few hours ago that he died peacefully this morning.

Pam

 

[andyguitar]

Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

And what evidence does Goddard have for this?

 

[mermaid]

@bertiedog I am so sorry to hear this. Dreadful. Sadly, it will not be the first or the last time such a thing has happened.

Conversely, although the NHS has done nothing useful for my ME/CFS, if it were not for them I might be totally blind (one macular hole op, 2 detached retinas - both eyes, 2 cataract ops). That would have put more than a dent in my mood (to misquote Leonard Cohen).

edit - sorry tried to quote your post but got it wrong.

 

[Martin aka paused||M.E.]

NICE examined the study situation.

Of all 236 studies that indicated that exercise training (GET) and cognitive behavioral therapy (CBT) were treatments for ME / CFS, the quality of the evidence was rated "very low" for 205 studies and "low" for the remaining 31 studies.

Or with other words: The authors of the former guidelines are idiots/lobbyists/corruptionary

 

[andyguitar]

NICE examined the study situation.

Of all 236 studies that indicated that exercise training (GET) and cognitive behavioral therapy (CBT) were treatments for ME / CFS, the quality of the evidence was rated "very low" for 205 studies and "low" for the remaining 31 studies.

And this is one of the functions of NICE. To determine if a treatment works and if it is cost effective. If it is then it should be available on the NHS. If not the NHS wont fund it. GET and CBT have been found to be of no use so I cant see how the NHS could still use it.

 

[andyguitar]

Or with other words: The authors of the former guidelines are idiots/lobbyists/corruptionary

They are fanatics @Martin aka paused||M.E. The Taliban of the medical profession.

 

[Noir]

I suspect there is a financial link, but it's a bit more subtle and insidious. The cost of healthcare is a large drain on governments and economies. The more sick people a nation has, the larger the economic drain in trying to care for them. For example, look at what the American Diabetic Association says about the cost of diabetes-327 billion to the US economy in 2017.

Jason and Mirin estimate the annual economic cost of ME/CFS in the United States alone to be 36–51 billion dollars in 2021. And that is before long covid is taken into consideration. One can probably only speculate how big these numbers are for ME/cfs and long covid worldwide.

What acceptance of ME would mean is that funding could be focused on actual investigation of the disease, rather that being wasted on psychiatric nonsense.

I assume that the amount of money spent on "researching" CBT and GET are very small compared to what would be needed to adequately research the biomedical side of ME/cfs. Now the status quo can be upheld by a meager worldwide spending of around perhaps $50 million per year in research (2007-estimate).

I'm sure they save plenty of billions on all the disability claims they now reject because people "aren't ill enough", or haven't tried GET and become ill enough, etc. As it is now funding for research and disablity is saved in government budgets, while CBT and GET "sells like hotcakes" for the psychological brigade.

In my part of the world politicians are far more into "getting people back to work" then making sure ill people get enough financial support to get by.

 

[Inara]

No it cant be delayed for long. And NICE could be ordered by a High Court Judge to publish the guidelines. If I had the money I'd do it.

What would it take?

 

[bertiedog]

For those of you in the UK, please email your Member of Parliament about this if you can.

You have got to be joking in my case as Craig McKinley is my MP, one of the most right wing Tories in Parliament. He is completely a waste of space but I do acknowledge there are some very decent MPs who might take up our case.

Pam

 

[BrightCandle]

You have got to be joking in my case as Craig McKinley is my MP, one of the most right wing Tories in Parliament. He is completely a waste of space but I do acknowledge there are some very decent MPs who might take up our case.

Pam

Mine wouldn't be any better, he is a Labour MP so has literally zero ability to change anything. I don't think any of the MPs in a position to care to help us is in a position to do so, which is why this sordid debacle continues.

 

[Bronc]

For those of you in the UK, please email your Member of Parliament about this if you can.

NICE have shown that they bow to political pressure, so it's time for us to stand up to the BPS cabal.

Petition here:

Don't let vested interests perpetuate harmful treatments for ME/CFS!

I totally agree we need to start taking action over this and contacting MP's is a good place to start along with the petition. I think what would be helpful is if someone could come up with a template that people could use or modify to send to their MP. I know that I would benefit from such a template as I'm struggling to think clearly at the moment. Thanks

 

[andyguitar]

What would it take?

More than £20K.

 

[andyguitar]

You have got to be joking in my case as Craig McKinley is my MP, one of the most right wing Tories in Parliament.

Mine wouldn't be any better, he is a Labour MP so has literally zero ability to change anything.

I totally agree we need to start taking action over this and contacting MP's is a good place to start along with the petition

If anyone does contact their MP it's worth pointing out that the NHS should not be spending money on treatments (GET, CBT) that have been found to be ineffective by NICE. And that it was set up to stop the NHS wasting money in that way.