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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Chronic fatigue syndrome page on RationalWiki.org

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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The NHS is generally a very good healthcare system for the things that it knows how to treat.
I think this is a big issue, medicine is good at what it understands, poor at what it does not. However funding tends to be based on corporate or government principles and ideology. Charity based funding does exist, but its always limited in scope.

Its also the case, as shown with government funding of tuberculosis care in New York, that when the costs are high enough, and treatment clear, government will at least subsidize it. The downside is too large to not do so.

Currently, based on what the NIH (or was it the CDC?) published just a few days ago, the high end estimate of the range of costs from ME and CFS are in the order of a trillion dollars every four or five years, as a global figure. For this almost nothing is done. Right now its basically a deny and contain policy. This is not a rational policy.

(I have previously used the figure of mid 20 billions annually for the US alone, but the recent estimate was over 50 billion. I have no idea at all if that estimate is accurate.)
 

Skycloud

Senior Member
Messages
508
Location
UK
Rationalwiki is an ideologically left-wing website, anything that does not comport with their political bias does not get accepted.

Considering the uniform opposition by socialized healthcare systems to CFS being anything other than psychogenic in nature, it makes perfect sense why it would.

You being disabused of agency in treating CFS is also why you're likely here, because it is a natural causality that socialized systems do just that, they reduce your ability to choose treatment pathways, especially if they can reduce real or in our case imagined risk to their best interests.

Also the reason why epipen is so expensive is because of...

You guessed it. Government overreach.

https://mises.org/blog/lack-epipen-competitors-fdas-fault

Thanks for the interesting link. I wasn't aware of the role of the FDA re: epipens but then I'm not in the US. I do know that my son has benefited from NHS prescriptions for a lifesaving drug whose cost has risen greatly. We are a low income family (and yes, that's got a lot to do with my being unable to work due to ME).

My view has never been that socialised healthcare is perfect; my agreement was with Snowdrop's whole post. To make one point again: both systems have weaknesses for patients. (Conversely, both systems have strengths.)

You say: "Considering the uniform opposition by socialized healthcare systems to CFS being anything other than psychogenic in nature, it makes perfect sense why it would." Maybe so, but in the UK they have been enabled by US health insurance companies. So Government and Companies are colluding in the best interest of 'someone -not-the-patient'. That can happen in both kinds of health care systems and also in mixtures of the two.

Which is better - greater access in a system which relies on the ability to pay however much it costs, or more restricted access in a system which is free at the point of delivery? It's an interesting question. Surely it depends on the circumstances. I have good reason to think that my low income family would be in a much worse position without socialised heath care.

I'm pleased for you that you live under the system which you clearly prefer, and I hope that the greater access to non-conventional treatment brings improvements in your health. I notice though that you, whilst not apparently "being disabused of agency in treating CFS" as you think I likely am, are still here too. All of us need better treatments. I hope we get them soon.
 

JayS

Senior Member
Messages
195
Well, now that we know that the geniuses on "RationalWiki" are following this discussion, let's afford them the opportunity to congratulate themselves. As they usually do, because it's generally difficult to draw any conclusion other than that they think they're the only clear-thinking brilliancy prize winners who see virtue in actually believing certain things. Such as, that creationism is a belief for which there is no evidence, and that the Scientific Theory of Evolution is not only the best but the only valid explanation for life on Earth as observed. Or that many 'complimentary' and/or 'alternative' therapies such as homeopathy are not evidence-based, and therefore essentially a scam, or exploitative placebo at best. That vaccines are generally a good thing for society, even if some might suggest that adverse effects are not well-understood and possibly under--reported (naturally anyone who would even suggest something like that is automatically a heretic who deserves to be branded 'anti-vax,' no matter how untrue that is).

They're the only ones who perceive the flaws in arguments disputing climate science, the only ones disturbed by quackery. They're the only rational ones, you see, and everyone else is anti-science, woo-peddlers, interested in data merely on the basis of desire to engage in a new form of terrorism unique to scientific research.


Because the One Click Group is bad, you see. Lunatics. So that's the only thing RationalWiki is interested in. CFS? What's that? Besides being some misunderstood illness which is probably psychosomatic (hence the helpful link at the bottom of the article), it's a valuable catalyst used here to advance the argument that disputing 'expert' guidance is something that, well, only lunatics do.

I don't know a lot about One Click. I do know that their general argument--that ME is an 'organic,' physical disease, for which CBT and GET are inappropriate and, in the case of GET, likely harmful, is most definitely an 'evidence-based' position.

So, Rituximab as treatment doesn't matter, because One Click is bad.
The IOM report, especially the section if the abstract that states this is not a psychiatric or psychological disorder, that doesn't matter, because One Click is bad.
Lipkin & Hornig's cytokine studies in Science and Nature aren't important because One Click is bad.
The Naviaux study in PNAS and the Fluge and Mella metabolomics studies, those don't matter, because One Click is bad.
The gut microbiome papers aren't worth considering, because One Click is bad.
All if the research showing harmful effects from exertion on 2-day CPET don't enter the discussion, because One Click is bad.

If course, even given that RationalWiki has helpfully sounded the alarm that One Click is bad, one shouldn't expect that they should find any of these worthy of posting on their super important website. They can't possibly be expected to keep up on... research? Evidence? No, shooting their mouths off in only one aspect of "CFS" that doesn't even have anything to do with the disease itself is all a Rational individual needs to know.

But the there's PACE, of course. It's just fine to ignore PACE, because it's not like there have been dozens if dispatches on Virology Blog (which is, if course, just a blog). It's not like James Coyne got involved and raised a stink following the steadfast refusal to give up anonymized raw data from a publicly-funded trial, the results from which inform governmental and insurance industry guidelines worldwide. It wasn't like there were scathing editorials about this in Sense About Science USA, Stats, the New York Times, and even Science-Based Medicine (who knew they were bothering with this nonsense? They must have gone woo...), all of which mean so little since none of those are peer-reviewed. It's not like the Tribunal ruled against the PACE researchers, and it's not like the recipient co-authored a peer-reviewed, published reanalysis of the worst of the PACE papers, which isn't being corrected, much less retracted, anytime soon. And it isn't like Retraction Watch hasn't been carefully covering all if this as the scientific scandal it has blossomed into. That's just a blog, too.

It isn't like there is a current series of papers in a health psychology journal discussing the ridiculous number if fatal flaws in this 'research'. It isn't like the CDC didn't have to take down their 'toolkit' since the primary recommendation of the IOM report was that the disease should be not just defined by, but named after, it's primary symptom if post-exertional malaise (better known to us as 'post-exertional deathlike paralysis with crippling pain', but that's neither 'scientific' nor 'rational'). Oh, wait. Every single one of those things did happen.

But, so what. None of that stuff matters, because the only notable thing about CFS is that One Click is bad. This is of course all very rational and Scientific, because we're the anti-science rabble who go around threatening researchers. Except, wait, the Tribunal found that claim to be false. But even today, RationalWiki finds the time to snark at us, with no attempt to so much as edit that shit stain of an article.

And they wonder why people figuratively throw their arms up in the air, believing that 'science' just isn't interested in finding an explanation for something thought to be 'unexplained.'

You guys have fun. You may not be making any great strides for medical science, but you're surely demonstrating quite effectively why 'skeptics' or whatever identity you geniuses care to claim are on the side of this controversy you're on. Because One Click is bad.

Got it.
 
I for one had never heard about this "One Click Group" thing before reading this article and I have trouble finding information about them. Were they hardcore patient activists ? What did they actually do ?
 

JayS

Senior Member
Messages
195
I don't know a lot about them. There was a controversy some time ago, maybe a decade ago. I believe there was some sort of threat lodged, or there was an allegation to that effect. There may be a link in, of all places, the RationalWiki page. My understanding was that it was a fabrication, but even though I don't make any claims as I honestly don't know, presumably makes me anti-science, or something. Never mind that there's never been any substantiation of any claims about death threats to researchers, nor has there been any follow up of those now-six-year-old stories.

It's easy to call someone 'anti-science.' Esther Crawley has now done this to both David Tuller and Professor Racaniello. And, it's okay, because One Click is bad.

(I have to doubt that anything terribly objectionable happened. Garden-variety gaslighting that got out of hand and escalated to a legit criminal complaint. But I'd have to look deeper to give a better answer.)
 

Esther12

Senior Member
Messages
13,774
I for one had never heard about this "One Click Group" thing before reading this article and I have trouble finding information about them. Were they hardcore patient activists ? What did they actually do ?

It was a bit before my time too, but think it was just three people, none of whom were ME patients. They did some anti-MMR stuff, some anti-Wessely stuff... now when people try to smear the patients raising concern about junk-science like PACE, they take quotes from One-Click to show how unreasonable we are.
 

Undisclosed

Senior Member
Messages
10,157
"Rationalwiki" is a dump, remember this is what progressives believe, these are the same ardent supporters of socialized healthcare, which by magical coincidence also supports the notion of CFS being of psychological etiology, gee I wonder why that is?

The page on CFS is obviously written by a troll. The One-Click group is not known outside of the world of ME/CFS. Ask any joe on the street who they are, they wouldn't know. I think you are making huge generalizations about the existence of the page on Rationalwiki. It was likely written to attack the One-Click group. Perhaps, you should try to edit the page for some truths and see if the edit is accepted.

Also the reason why epipen is so expensive is because of...

You guessed it. Government overreach.

That's in the USA. In Canada, the cost of an epipen has remained the same thanks to our awful government regulating drug prices

Article here -- http://www.benefitscanada.com/news/why-are-epipens-so-much-cheaper-in-canada-87415
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
The left hasn't been very good on the whole "science" thing as of the last 10 years, especially the last 5.
That's an odd statement considering research clearly shows science & left wing tend to go hand in hand.
Then there's the research on IQ, education & rationality & its correlation to ideology.
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
"Rationalwiki" is a dump, remember this is what progressives believe, these are the same ardent supporters of socialized healthcare, which by magical coincidence also supports the notion of CFS being of psychological etiology, gee I wonder why that is?


Only a capitalist "shitlord" free market will provide adequate treatment for CFS/ME as has been demonstrated many times now in our own forums.

Wow. I was first going to ask where you live, as far as what is considered "progressive" there, but then that's not the real issue. Regardless of where you fall on the political spectrum, whatever it is that you have to say can be expressed without the venomous dumping and name-calling.

Point #2, if you're looking to change minds, you'll not get it by insulting those minds you want to change. I had to stop reading your post after a few sentences because I have enough righteous anger as it is after years of having a misunderstood illness.

Point #3 And "that shitlord free market" is focused on profit. Pharmaceuticals = profit. Thus, the exorbitant amount of money spent on research for things such as erectile dysfunction. And not on an illness that not profitable.

Just so you know, I was a conservative Republican (US) for the first 15 years of my adult life. Then, I was an Ayn Rand quoting Libertarian. And now, after decades of self-initiated research and reading and observing in various related disciplines; not only politics, but business, sociology, economics, psychology, various sciences, etc. I am a liberal Democrat who believes in responsible capitalism. But really, that's a whole other post. The reason I mention any of this is to convey that my political convictions have a sound basis.

In my experience, it's my mostly my "leftie" friends and family who have been open-minded enough to be willing to learn about my illness, while the majority of my "right-wing" friends and family already have their minds made up, trivialize my illness, think I'm making it up.

As people with ME, we get enough crap dumped on us. Please be mindful of dumping on half the readership here.
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
That's an odd statement considering research clearly shows science & left wing tend to go hand in hand.
Then there's the research on IQ, education & rationality & its correlation to ideology.

Exactly. It's the "liberal elites" who teach at universities and conduct research.
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
The left hasn't been very good on the whole "science" thing as of the last 10 years, especially the last 5.

Does. not. compute.

It's the liberals who are accused of being science lovers. We even had large, world-wide demonstrations you may have heard about...

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