The influence of the biopsychosocial (BPS) view of ME/CFS in government guidelines and medical practice in different countries (past and present)

[wigglethemouse]

If you have decent health insurance, which is a big if, you have some freedom to doctor-shop and find specialists who actually understands your illness.

Just to clarify. The majority of people with health insurance in the US have an HMO plan which does not allow you to doctor shop. If you pay more you might have access to a PPO plan which does. In California I think there are two PPO/EPO $$$ plans offered under Obamacare (Covered California). Most are HMO type plans.

 

[dave30th]

The majority of people with health insurance in the US have an HMO plan which does not allow you to doctor shop.

Plans are all different. Many plans allow you to go out of network and pay more. But HMO plans still often allow you to find another doctor or doctors within the network if you don't like your primary care doctor. Kaiser is a bit different. And you might be able to go to specialists in the network even if you're not referred by the primary care doctor--but you might pay a bit more. It's all over the map and each plan is complicated specifically so you can't understand all your rights very well. My UC Berkeley health insurance plan is a PPO-type that lets me see people outside the UC network but I need to pay a bit more if so.

 

[wigglethemouse]

But HMO plans still often allow you to find another doctor or doctors within the network if you don't like your primary care doctor.

In my experience the basis of an HMO plan is that all care has to go through your primary care physician to make referrals. However you are allowed to change primary care physicians within your network.

PPO is good, but if out of network you usually have to pay several $K deductible first before their 70% benefits of whatever it is kick in.... I know you understand, just trying to clarify (or muddy the waters ) for others.

 

[dave30th]

just trying to clarify (or muddy the waters ) for others.

when it comes to the US insurance market, clarifying the waters is not possible!! it is deliberately complicated so people can't figure it out

 

[Sean]

My sense is that NHS is great if you have a broken leg or most things which meet standard and well-known diagnostic criteria with standard treatments

I think that is generally true of medicine. Very good at diagnosing and treating things they already know how to diagnose and treat.

But anything else, not so much, and very reluctant to admit it.

 

[chrisb]

Going back to a point that @dave30th made earlier about the interchange of ideas from one side of the Atlantic to the other and the complexities involved in understanding developments I have found more about Barry Blackwell, co author of the Illness behaviour paper. It seems that before becoming professor in Wisconsin he was a UK citizen educated at Cambridge and was at the Maudsley between 1962 and 1967. Interestingly this covers the period that Mechanic was doing research at the Maudsley, assisted by JK Wing.Microsoft Word - Blackwell CV.docx (inhn.org)

In another nice touch the CV shows
RELATED PROFESSIONAL EXPERIENCE 1967-1968 Family Practitioner and Epidemiological Research (with David Goldberg)

Goldberg it was who endorsed the biopsychosocial approach to ME in the British Medical Association Bulletin of 1990 in which he gave uncritical attention to Eisenberg's 1987 lecture.

It really is a small world.

 

[Trish]

I would be interested to hear from people in countries other than the USA and UK about how the BPS approach to ME/CFS has evolved in their country, and what it is like now.

I get the impression from members here that the psychosomatic view is or has been dominant in many European countries and Australia. Was it always so, or were ther prominent doctors who pushed it hard like Wessely and chums have in the UK, and how much was as a result of the UK psychiatrists spreading their influence worldwide, and how much was home grown?

 

[chrisb]

I have come across references to close working relationships being developed by John Wing who headed the Social Psychiatry unit of the Maudsley with Danish and Dutch researchers as well as those in the US.

 

[Dolphin]

It would take me a long time to describe things properly in the Rep. of Ireland. We don’t really have any M.E. or CFS clinics partly because we stopped pushing for them after seeing what happened in the UK: the public health system here tends to copy to a extent the NHS. There was a national steering committee in the mid-2000s which seemed to be going OK but then the draft NICE guidelines came out and things tilted towards the CBT/GET approach. It eventually collapsed after a breakdown between the ME charities and the people writing the report.

There are no guidelines again because we haven’t pushed for them because they would likely be heavily influenced by the NICE guidelines and also the CBT and GET trials from the UK and elsewhere. It is frustrating how things here can be influence by things in other countries.

Because there are no CBT and GET clinics people don’t get pressurised much to do them except for some private disability insurance cases.

Because there are no national guidelines or CBT/GET clinics, most media coverage emanates from patients and patient groups so the biopsychosocial approach doesn’t get that much media coverage. An exception is some reporting on CBT and GET trials in other countries like the PACE Trial and some newspaper articles copied from UK newspapers.

 

[Mij]

I would be interested to hear from people in countries other than the USA and UK about how the BPS approach to ME/CFS has evolved in their country, and what it is like now.

I get the impression from members here that the psychosomatic view is or has been dominant in many European countries and Australia. Was it always so, or were ther prominent doctors who pushed it hard like Wessely and chums have in the UK, and how much was as a result of the UK psychiatrists spreading their influence worldwide, and how much was home grown?

I'm very interested to know if this approach changed from when I became ill (Canada) in the early 90's when it was nonexistent based on my own experiences and several others after seeing dozens of doctors and specialists. Do doctors here even know what GET means? I only encountered one doctor in the 90's (Internist) who told me that he no longer believed that CFS could last up to 10 years, but he never referred to it as psychosomatic.

I guess it will come to light with all the LC patients being advised to attend clinics that are being set-up here.

 

[Mithriel]

In the early 80s my husband was a microbiologist and there was a renewed interest in enteroviral research in the meetings and things he attended. It had gone on for a few years and a test was developed. He even wrote a program on his spectrum which he took to work once a week to analyze the results

A lot of viral diseases were investigated then that were thought of as mild and only serious in young children or a few people, such as rotovirus and the knowledge about them has greatly increased.

It was all quite basic research but it was left behind when CFS came along. The US researchers were more interested in fatigue, EBV and the immune system rather than enteroviruses, brain damage and exercise problems. And the UK government stopped funding biomedical researcher at all.

 

[rvallee]

I would be interested to hear from people in countries other than the USA and UK about how the BPS approach to ME/CFS has evolved in their country, and what it is like now.

I get the impression from members here that the psychosomatic view is or has been dominant in many European countries and Australia. Was it always so, or were ther prominent doctors who pushed it hard like Wessely and chums have in the UK, and how much was as a result of the UK psychiatrists spreading their influence worldwide, and how much was home grown?

In Canada we don't have a national health care service, rather we have national standards that provinces are responsible for implementing. So we don't have anything as structured as the NHS or NICE to push through something like BPS. It either happens organically or it doesn't, but abusing political influence the way it happened in the UK is not really feasible, too many pieces to coordinate and lobby.

For the most part we have nothing formal, borrowing a lot from the UK, sadly. But it's not pushed from the top-down.

My experience seeing dozens of doctors no one ever used any of those terms or pushed anything. Mostly just shrugs and/or "probably nothing". So there's more of a void, I think it's more taboo than anything, if no one voices it out loud it only exists beneath the surface. Chronic illness simply does not "exist" here. Other than in stats anyway, where of course we do exist but health care systems just don't give a fig.

It would be better were it not for the fact that because of historical circumstances UK institutions like NICE and the usual sources of misinformation like Cochrane have some weight over here, even if minimal. Would have been far better if we'd just follow the US lead, all things considered.

Maybe it's a bit different in Quebec, our medical system is largely sovereign and relies less on the UK than the rest of Canada. Were it not for my GP who suggested it first, I would never have even heard of it, even today. But there's nothing offered at all, entirely left to our own. Which is probably the better alternative, I'd certainly take that any day over the dreaded CFS clinics system.

 

[dave30th]

It was from Eisenberg interpretation of "chronic brucellosis" and "chronic mononucleosis", relying on Imboden Canter and Cluff that the British psychiatrists appear to have learned their trade.

Interesting. I haven't heard of any of these folks.