Stat News: Tuller & Lubet: The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?

https://www.statnews.com/2018/07/19/chronic-fatigue-syndrome-insurers-disability/

 

Just left a comment to encourage Stat News to do more ME stories:

Excellent issue to bring forward.


After exposing the fraudulent ‘researchers’ that produced the fake data that insurers rely on to deny benefits to people living with ME, the next battle is with profit-making insurers who view people with ME as a threat to their stock price and executive bonuses.


No doubt the multi-national insurance corporations will resist having to pay benefits to people disabled by ME, and will (continue to?) fund psychological research to undermine and contradict biological ME research.


The prevalence of ME is just too great, the amount of profits too valued over people, for insurance companies to just roll over and acquiesce to reality.


Unless the cost to defend their position is greater than the profits they are making from it. Class action lawsuits can be effective in these instances.

 

I'm told a good place to maybe attempt to put pressure on insurance is at their regulatory hearings where premium rates are set. If insurers are looking to increase premiums one could enquire as to where monies were spent paying out/assessing/denying claims.

Does anyone know more about this?

 

Stat is probably the best health news site there is (in my opinion), so good to see this on there.

 

Excellent stuff. Congratulations to Vastag once again. Thanks to Tuller and Lubet too - great to get some more coverage (no mention of PACE?! I guess detailing the insurance COI issues would have tripled the length of the article).

I thought it might be worth trying to be a bit more careful to avoid any language that could be interpreted as reflecting a dismissive attitude to psychiatric disorders, eg:
"many of the 1 million or more Americans who have it are ridiculed and dismissed as delusional, hysterical, or suffering from some psychiatric disorder." I realise that it is insurance companies who are being dismissive, but given the prejudices we face in this area (and the prejudices people with psych disorders face) I think it's worth being super cautious with language on that topic.

 

The elephant in the room is that only 10% of those with ME/CFS are even diagnosed.

It was 15 years from my last full time job with disability insurance to actual ME/CFS diagnosis. If not for family support, I likely would have starved to death on the street.

The reality for ME/CFS sufferers who lose their jobs without a safety net is very cruel.

 

Hi, how would you have phrased this? I go back and forth on how much one should adjust language for people who are going to make bogus arguments no matter what the reality is.

 

I think that I'd avoid having words like 'ridiculed' and 'dismissed' in the same sentence as a point being made about the problems of classing the condition as a psychiatric disorder. Could have it as a separate point?

"many of the 1 million or more Americans who have it are ridiculed and dismissed. Classing these patients' health problems as a form of psychiatric disorder can help insurance companies reject their claims, or reduce payouts."

I realise that's clunky, but something like that?

 

I would be very tempted to add a word to the second sentence, to emphasize that such a psychiatric label would be incorrect. Maybe something like "Wrongly classing these as..."?

 

Or Falsely. I think "falsely" connotes something a little more sinister and deliberate...

 

Thanks, that's not bad.

 

Today I received an early proof edition of Dr Byron Hyde's new book - Understanding Myalgic Encephalomyelitis - I went directly to chapter 9, titled:

The Role of the Insurance Industry and the Ongoing Vilification of ME

Dr Hyde shares an account of attending a lecture on ME for physicians, delivered by Dr. Simon Wessely and sponsored by an insurance company, at the University of British Columbia (UBC), Canada.

The following day Dr Hyde became aware of 3 ME patients who had received calls at 8am from their insurance companies informing them that their insurance coverage had been discontinued as experts had concluded ME was not real, just hysteria, and to be treated with antipsychotic medication. Dr. Hyde writes:

Obviously the presentation of Simon Wessely delivered the day before at UBC was already in the hands of the insurance company. He was paid to be at UBC by the insurance companies.

Dr Hyde has a couple more just-as-shocking insurance stories, like about his visit with Dr Colin McEvedy, who did his PhD on characterizing the Royal Free Hospital ME outbreak as mass hysteria and how, even before his thesis was published, it was on the cover of Time Magazine in the US.

I'm not a conspiracy theorist, but jeezus, if it walks like a duck.

 

Quite a few patients committed suicide following Wessely’s visit in British Coumbia which was late 1980’s or early 1990’s. If I remember well, from someone who lived through it, it was over 20 patients.

 

This is so sad
I wonder if he can be sued for wrongful death, his research was fraudulent and it led to much pain, suffering and those deaths...

 

The Wesselys, Whites, Sharpes, Chalders, and Crawleys of this world, and their counterparts in other countries, have blood on their hands, and more than a drop or two.

Mostly indirectly, via their influence over academia, science, media, and especially clinical guidelines and practice, and policy advice (to both government and the private insurance industry).

But blood on their hands they have.

 

@ScottTriGuy I believe that Dr Hyde has written about those events before. As I recall it he previously went further on the subject of his discussions with McEvedy, which took place over a bottle of whisky. There was a suggestion of links of Beard to the insurance industry. It would be interesting to see if this is repeated and, if so, one wonders whether there are contemporaneous notes of the conversation.

 

I really don't think they care a damn except for their own welfare. Despite their sanctimonious protestations, if they really cared for the welfare of PwME, then the ME/CFS world would be in a vastly better place today than it is.

 

Yes, when I interviewed Dr Hyde in Montreal he recounted that McEvedy cognac-soaked meeting (as well as dramatic near-death experience swimming with the Trudeau family in Russia, iirc).

From Hyde's book:

"I have no doubt that Willy Beard, the insurance physician organized the entire PhD. His [McEvedy's] thesis is online and you can download it free of charge from the gracious Magdalen Oxford Librarian. It is so easy to destroy other people's lives..."

 

This would interest me, too.

@ScottTriGuy, great comment!

 

Reality is that most people view people with psychiatric disorders as inferior, as lazy and simulants, so in my view "belittle" mirrors this reality very well. I agree it shouldn't be so, but there it is.