NICE are NOT going to publish the new guidelines tomorrow

[andyguitar]

Not publishing the guidelines does not alter the fact that after years of debate at NICE new guidelines have been decided upon. They cant change them.

 

[nerd]

Let's follow the logic of these "experts" who argue that it doesn't matter which therapy we use as long as we have a therapy. NICE has to follow reason when including therapies. And it has to be transparent, doesn't it? So what's their reasoning, assuming that we can blatantly ignore that these therapies don't work.

We recommend GET because we think it's more important to have a therapy that allows some health care providers to maintain their hospitals than it is to upkeep our medical ethics that forbid us to make harmful recommendations. The sacrifice of these patients is appropriate because their sacrifice ensures the survival of the psychiatric community and their credibility. After all, who knows when we will need them again, and we can't risk harming their egos. Hence, we ignore the evidence just as they do. They are good examples for our medical community, after all. What's more important than ego and financial profit?

So let's throw out years of work out of the window because we can't risk these sensitive personalities to disregard official guidelines, which they legally can not unless they want to go to court for it.

It just doesn't make any sense. You can't delay this forever.

 

[andyguitar]

It just doesn't make any sense. You can't delay this forever.

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.

 

[nerd]

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.

Maybe that's what they want. Another few years of evidence presentation and discussion in court. Until they can manufacture a new study showing how well GET works for Long Covid. Based on subjective improvement interpretation of course.

 

[andyguitar]

Maybe that's what they want. Another few years of evidence presentation and discussion in court.

A Judge would'nt be interested. What would be considered is: Has due process been observed? Answer is yes. The NICE committee has looked at all the evidence presented and came to a conclusion. So if NICE refused to publish the question would be "Why not publish?". They dont have a good answer. Game over.

 

[Rufous McKinney]

We recommend GET because we think it's more important to have a therapy that allows some health care providers to maintain their hospitals than it is to upkeep our medical ethics that forbid us to make harmful recommendations. The sacrifice of these patients is appropriate because their sacrifice ensures the survival of the psychiatric community and their credibility. After all, who knows when we will need them again, and we can't risk harming their egos. Hence, we ignore the evidence just as they do. They are good examples for our medical community, after all. What's more important than ego and financial profit?

Why would the US be paying ANY attention to this malpractise in Great Britain. (other than noting malpractise)

Those egos and those financial profits, and those treatments centers, mean nothing to the U.S.

I think Follow the Money will explain the ongoing scandal in Britain. But here in the US? We have Stanford and Harvard and we have , oh the boyz who now worry about Long Haul COVID and maybe they blew it (Fauci, Collins et al.).

Fancy dancy medicine makes US Doctors and specialist hospitals alot of money.. They call it an industry- the cancer industry, for instance. The cardio centers are an industry.

so our industry is- ignore those people.

Something stinks around here.

 

[wabi-sabi]

I think Follow the Money will explain the ongoing scandal in Britain. But here in the US?

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.

more info here: https://www.diabetes.org/resources/statistics/cost-diabetes

Just think of all the people with ME/CFS and now long COVID and how much it would cost to take care of us, if we got real healthcare instead of GET and CBT. They are touted as cost effective treatments because they are cost effective- they just aren't treatments. This isn't about individual docs making money- it's about sinking a nation's economy with healthcare costs.

There is huge financial pressure for lots of countries not to admit we are sick so they don't have to incur the costs of caring for us. It's possible that national pressure is worse in the UK because they have an NHS, but we see it here in the US in terms of how hard it is to get disability.

 

[Rufous McKinney]

but it's a bit more subtle and insidious.

yes, grump

diabetes there is actually considerable personal control in the Type 2 dept.

cancer- very little personal control, as toxins get spewed whether you eat it or not. They are happy to treat cancer and love personal medicine cancer.

Our illness ME CFS- doesn't seem to warrent surgeries. Nothing to "cut out" or remove or nuke or zap.

Our productivity- they forgot- that if we could correct this, most could work or do something more than rot.

 

[wabi-sabi]

Our productivity- they forgot- that if we could correct this, most could work or do something more than rot.

That's the other really interesting thing. I get the feeling a large number of these BPS and anti-actual scientific data folks think we could correct this if we just tried hard enough. Obviously we are getting secondary gain from being sick and are really enjoying our sick role. We are, after all, just malingerers and not really sick.

There's an interesting book mentioned on Cort's blog on healthrising- Sick and Tired. I've been reading it slowly. Much of the book explains our bad attitudes towards sick people, especially sick people who have symptoms like pain and fatigue.

We are all just suposed to bootstrap ourselves and it's our own fault if we won't.

 

[Rufous McKinney]

We are all just suposed to bootstrap ourselves and it's our own fault if we won't.

I bootstraped for 48 years at least. I continued to work when it made me sick. I continued to work and now I am brain damaged.

yes- I guess this is what they desire, well I"ve made a big note to myself for NEXT TIME.

Here is a soundtrak....if you can make it to the chorus

 

[Breagjam]

Collins and Fauci may be sitting in their rocking chairs with a secret smile on their faces!

No $$s have been spent on actual research yet for Long Covid out of the $1.15B they are supposed to be handling. Its an embarrassment.

 

[andyguitar]

That's the other really interesting thing. I get the feeling a large number of these BPS and anti-actual scientific data folks think we could correct this if we just tried hard enough.

Yes I expect they do. And they are fanatical about it.

 

[Rufous McKinney]

No $$s have been spent on actual research yet for Long Covid out of the $1.15B

they are good at reallocating.

maybe this got reallocated to cover bridge repairs.

 

[BrightCandle]

They are genuinely going to great lengths now not to correct a historical wrong. At what point do their actions cross over from negligence due to ignorance to a crime from malpractice? At this point they have all the data they need to conclusively shut the clinics down and change the process, since they refuse to I would say we are now at the stage where NICE is willingly allowing Doctors to knowing hurt patients.

 

[Rufous McKinney]

At this point they have all the data they need to conclusively shut the clinics down and change the process, since they refuse to I would say we are now at the stage where NICE is willingly allowing Doctors to knowing hurt patients.

But didn't your MPs stand up finally? Are they fine with this level of money being wasted on non-treatment?

 

[Wishful]

Just think of all the people with ME/CFS and now long COVID and how much it would cost to take care of us, if we got real healthcare instead of GET and CBT.

I don't see that there'd be much extra medical cost for admitting that ME is a physical disease. There's no clinical test and no treatment. Educating doctors so that they could do the tests to rule out other possibilities, and finding none, declare the patient "possibly ME". Yes, that might mean extra costs for disability support, but that's what society expects for the disabled.

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.

 

[wabi-sabi]

Yes, that might mean extra costs for disability support, but that's what society expects for the disabled.

Erm... I don't get the feeling my society expects that.

And these costs aren't trivial. In the US they can be 200 billion and possibly up to 355 billion annually. Sounds to me like 355 billion reasons a year to claim we aren't disabled because we aren't really sick. This data comes from 1997, so I'm betting the costs are higher now.

link here:https://www.ncbi.nlm.nih.gov/books/NBK233581/

If we'd just all do our GET/CBT we wouldn't cost so much.
But maybe I'm just being cynical.

 

[Wishful]

Erm... I don't get the feeling my society expects that.

I think voters voted to establish care for the ill and the disabled. If society in general wanted to stop funding that, they'd apply pressure for it. It's the bureaucrats that waste the money and limit who can qualify for it to serve themselves. Post a poll somewhere (other than here, since we're strongly biased in favour) and ask whether society should support the honestly disabled.

 

[Rufous McKinney]

If we'd just all do our GET/CBT we wouldn't cost so much.
But maybe I'm just being cynical.

there is every reason to be cynical.

 

[wabi-sabi]

I think voters voted to establish care for the ill and the disabled.

In the US much disability care is done through Medicare. The precurser to Medicare was proposed by Truman in '45. It took until '65 and Johnson to get it passed. I'm sure ordinary voters had something to do with it's eventual passage, but 20 years to get a bill passed doesn't speak to me of the people in general being really in favor. Disability coverage wasn't added to Medicare until 1972. I'm not sure there was any health coverage for disabled people in the US before that. There's a five month waiting period for disability benefits and then a 2 year waiting period for Medicare benefits, if you manage to convince someone you qualify for SSDI.

I'm rather conflicted about how much this history says my country cares about disabled people. We didn't even get the ADA until 1990!

But, as I said, I'm cynical.

How do you do it in Canada?