How long before the misery of ME is taken seriously? and Money’s the motive for calling ME a myth - Sophie Palmer

In the days before CFS, the disease called ME was believed by patients and medical people who treated patients and researched the disease to be caused by a viral infection, which could have been subclinical, was neurological and where there was an abnormal response to exercise. This was not just doing a lot and feeling bad for a while the way PEM is often described but being unable to walk after mental exertion or becoming lost in a familiar area because you walked too far. Also the tiny stops lasting a few seconds or a couple of minutes never seem to be mentioned as part of PEM.

These doctors worked during epidemics and it was the same thing as the way people with long covid know it is connected to covid because it happened after they had covid or deduce it was covid they had because it matches long covid. These epidemics were enteroviral so it may be that is why neurological signs were so common.

What we now call ME may be caused by different viruses but it seems very unlikely there is no viral trigger. It may be there are more than one disease involved, made more likely by the confusion spread (deliberately) by renaming and redefining ME to CFS.

My own personal view is that the Workwell results showing we slip into relying on anaerobic respiration for normal living instead of just using it as an emergency system explains a lot of what I have always had and is a better description of the energy problems in ME rare, if not unique.

 

Sadly I see this happening to some extent with evidence based medicine now. The movement is failing, but has not fully failed yet. Its just on its way. EBM is the label for the new dogma in the thoughts of most doctors I see. I wonder if more than a small percent could actually tell me the evidence for many of the guidelines, rather than just the conclusions. I also find that doctors do NOT want to know about the science. Their rules and guidelines are enough.

I have often told people that if you have something unusual wrong with you to find a doctor who has the same problem. They will at least make an effort to stay informed, though still subject to a tendency to dogma. The alternative is to find a doctor involved in genuine medical research in the area. Doctors who fit either criteria are rare for ME however, at least in my area of Australia.

With genuine medical research I exclude psychobabble, which I regard as unscientific. So far as I can see the entire BPS movement boils down to an unscientific, dogmatic, and financially motivated movement.

 

I still believe that ME is a response to immune activation, and while viral infections are the most common trigger, they're not the only ones.

 

Follow-up: Money’s the motive for calling ME a myth

 

Or specific types of activation and associated processes, including metabolic changes. We still do not know how diverse the changes are.

 

It’s pretty much alt-right. They love an establishment-bashing conspiracy theory as much as the Canary does.

Far more useful to get a more nuanced, but still damning, piece on Wesseley into something serious and respectable, like the FT or the Economist. I see no good in lining up anti-BPS articles with anti-vaccers and geopolitical contrarians.

 

This is truthful, well written and correctly characterised the battle against short termist false economy. Any day the truth gets an airing is a good day IMHO, anyone who dares to publish it is noble, maybe underpaid but noble nevertheless.

It might have been dismissed as Alt right for a while by those who have that agenda but it is truthful and the more the story is told, the closer comes the day it will get an airing in the mainstream.

There is more to include like the impact in the USA of The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) on insurance company economics, why would the US govt make that law if it was not a real issue? Plus a few telling quotes from Byron Hyde's Little Red Book about the real origin of the theory of hysterical illness. There is a story here for anyone with the stones to publish it.

As my avatar hints, campaigning for ME research sometimes seems a little like a Quixotic adventure, as though tilting at windmills mistaken for giants. Yet as with renewable energy, what might have seemed Quixotic lunacy once is fast becoming accepted as common sense by a majority of people, not because we have all gone mad, because it is true and is common sense, not paranoia or conspiracy theory and that is the difference.

This is the truth and the truth will out.

 

In happier days, a magazine called Conservative Woman would be asking Rishi about his favourite cakes, and offering tips for making bunting out of discarded frocks.

 

I wonder if the characterisation of BPS approaches to ME as a deliberate attempt to avoid justified insurance and benefit payments is strengthened by appearing in a right wing forum, where normally you might expect little enthusiasm for disability related payments?

 

It’s difficult to unpack this without skirting dangerously close to discussing politics, but I think that what you say would be absolutely true of, say, the Times, Telegraph or Mail, or even of Conservative Home. But there tend to be all sorts of views on social protection at the conspiraloon fringes of the alt right, perhaps because they can’t afford to alienate any potential converts.

 

I would expect that the rules around politics would allow discussion in this particular instance, as it clearly intersects politics with ME ("This article considers the arguments of those who believe that vested interests have sought to retain the idea of ME as a psychological disorder.") The website's about page lays out its philosophy very clearly.

The forum rules state: "Politics may be discussed strictly in the context of ME, but must still avoid any generalizations about members or supporters of political parties."

I don't think it's necessary to prosecute this at length, but it is noteworthy. Without making comment about individuals associating with or supporting this particular ideology, one can note the historical and current attributes of any extreme politics — in particular the promotion of conspiracy theories as a modus operandi. That's probably well understood by this audience and little more need be said.

Let's just say this particular website wouldn't be top of my usual reading list. And yet, here we have one of the most accurate historical summaries as it relates to ME patients as a marginalised and abused group in society. That's an opportunity and a major problem. It gets the information in front of more eyeballs — including those who are socially privileged, resourced and inclined to change the status quo (in their favour) — but it's terribly tainted by association. It may even allow dismissal of its ideas and the objective truth as "just another conspiracy theory".

As above, much better to have this in mainstream media.

 

I take comfort from the thought that any journo worth their salt will fact check any alleged conspiracy theory article and if they do, will find these articles about ME are accurate.

 

Agreed.

I looked at the TCW "About us" page. Their motto: "Defending freedom", fits in very nicely with the anti-vaccer, anti-masker group who blocked two international border crossings (Canada/USA), and invaded part of Ottawa last year.

Ironic, this Canadian group's "fight for freedom", that purportedly was to free citizens from government tyranny, instead, interfered with the freedom of many other Canadians just trying to go about their daily business.

 

This is definitely one area of crossover where the economic concerns can be taken seriously and build a bridge. It's beyond clear that the human suffering element isn't worth a damn, leftist politics will not help us here, but spending billions to waste trillions while lying about it the whole time (it's your tax dollars going for this) is something that can cross the political spectrum. A bad deal is a bad deal and when the numbers are added up plainly they don't lie.