BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

[Sasha]

The UK is a magnificent country.

Thank you! [imagine a Union-Jack-waving smiley here]

It is, however, a relatively small piece of a large world. What kind of thinking allows them to dismiss the knowledge of the entire rest of the world simply because it didn't originate in their little corner of the world? I am sincerely baffled by this

The impression that I've got, when I've tried to talk about testing from the US with my UK doctors is that they dismiss stuff that they're not familiar with from the US because they see doctors in the US as being motivated by money. Unlike the UK, where we have the NHS, which is free to patients at point of use and now (supposedly) evidence-based, US doctors get paid more the more a patient sees them and the more tests and treatments the patients have. I think many UK doctors therefore believe that US doctors will order tests and treatments of unproven and questionable validity in order to make money off patients and they therefore don't take them seriously.

This is nuts, of course, to dismiss everything wholesale, but it's certainly my impression that this is the thinking. It's not just ME: a friend of mine had to move to the US to get medical treatment for an agonising pain condition and found the same attitudes from UK doctors.

I can see how they could delude themselves into thinking extensive testing for exclusionary conditions, which would be expected to come up negative if the patient has ME, is colluding with delusional patients, but how can positive test results showing clear abnormalities be seen as colluding with a delusion? Are the positive test results themselves a delusion? Are the doctors, labs, and lab equipment all caught up in some kind of mass hysteria that magically makes lab test results abnormal? Deluded machinery colluding with hysterical patients? Patients with the mental power to alter lab testing to produce false results? May I ask -- just where is the delusion here?

If they're not familiar with the tests, they'll assume they might not be valid. I think this is the case even with tests done in countries with free medical treatment where they don't suspect a profit motive. It's lack of familiarity and maybe they don't know how to assess whether the tests are valid.

 

[chipmunk1]

Ok. The "hypothesis" of the author can be easily disproved...

Most people who got CFS didn't know and didn't care about the condition before they got seriously ill. Joining a support group happened long after becoming sick.

Usually it does take a while to get diagnosed and people are usually very sick and have been for a long time when they get diagnosed. The illness starts before the idea not the other way around!

The fact that there are CFS clusters in families is not an indication of psychogenic disease unless you ignore that "genes" exist. Eighteen century medicine would of course not agree with this.

The fact that being part of a CFS peer group might be associated with a worse prognosis is also quite meaningless. Being in a hospital is associated with a higher death rate. I guess we should close all hospitals then.

From a psychoanalytic perspective i suspect the author lacks empathy for CFS patients because he was raised by a cold and distant refrigerator mother while subconsciously hating his weak father for oedipal reasons.

The weak patients that never get better stand for his father while he has internalised the cold and distant attitude of his mother. His irrational obsessions with "memes" are rooted in the subconscious desire to communicate and let out his early childhood frustrations. The id wants to tell the story but his superego prevents him from doing so creating the meme story as a straw man. This is of course very tragic but help is around the corner.

Cognitive therapy can help him retrain and restructure his irrational thoughts and behaviour while a few sessions with an experienced analyst can help him uncover his early childhood traumas and let go the hate towards his parents.

 

[Sidereal]

From a psychoanalytic perspective i suspect the author lacks empathy for CFS patients because he was raised by a cold and distant refrigerator mother while subconsciously hating his weak father for oedipal reasons.

The weak patients that never get better stand for his father while he has internalised the cold and distant attitude of his mother. His irrational obsessions with "memes" are rooted in the subconscious desire to communicate and let out his early childhood frustrations. The id wants to tell the story but his superego prevents him from doing so creating the meme story as a straw man. This is of course very tragic but help is around the corner.

Cognitive therapy can help him retrain and restructure his irrational thoughts and behaviour while a few sessions with an experienced analyst can help him uncover his early childhood traumas and let go the hate towards his parents.

. Post of the year.

 

[SOC]

US doctors get paid more the more a patient sees them and the more tests and treatments the patients have. I think many UK doctors therefore believe that US doctors will order tests and treatments of unproven and questionable validity in order to make money off patients and they therefore don't take them seriously.

Most doctors make a fixed salary like everybody else. They don't make more money for more patients any more than a teacher makes more money when they have more students in a class. Okay, it is true that doctors in private practice might make more money for more patients (which is also true in the UK), but the vast majority of doctors work as salaried employees of clinics.

Doctors don't make money off the lab tests, the laboratories do. Doctors don't get paid more for giving more treatments, either. The pharmaceutical companies make more money, but that's hardly motivation for the doctor to order the treatment. Doctors don't have the freedom to order unvalidated lab testing or treatments willy-nilly; it all has to be approved by insurance companies who don't want to pay out any more than they have to. Those UK docs don't have a freakin' clue what they're talking about. It's like they think the US is some kind of medical fantasy world. If they think the medical streets are paved with gold in the US, maybe they should come over and see how they like it. We'd be glad to share our milk and honey. Our grass is greener, too.

Where do your doctors get these insane ideas? Do they not teach critical thinking, logic, and the scientific method in UK schools? Or is it just that they un-teach these topics in UK medical schools? They must take at least one course every term in Misinformation and Delusional Thinking.

This is nuts, of course, to dismiss everything wholesale, but it's certainly my impression that this is the thinking.

Nuts, indeed. And incredibly ignorant.

If they're not familiar with the tests, they'll assume they might not be valid. I think this is the case even with tests done in countries with free medical treatment where they don't suspect a profit motive. It's lack of familiarity and maybe they don't know how to assess whether the tests are valid.

"I don't understand it, so it must be wrong. And dishonest." Brilliant.

Our medical system has some serious problems, but.... there's stupid and then there's STUPID. I really feel for you having to deal with such utter stupidity.

 

[Cheshire]

Another parameter often used that doesn't proove anything:

Conversely, it has been suggested that being Asian (groups, arguably, whose distinctive cultural identities might well form barriers to memes) is a protective factor against CFS (4)

And being caucasian prevents from getting sickle cell. Does that mean it is a social construction?
And MS has a weird and ununderstood geographical breakdown. Are MS sufferers subjected to a meme?

 

[Ritto]

Surely, Me can only be half a meme?

 

[chipmunk1]

Another parameter often used that doesn't proove anything:

Conversely, it has been suggested that being Asian (groups, arguably, whose distinctive cultural identities might well form barriers to memes) is a protective factor against C

Ever heard of Crohn's disease, MS, childhood diabetes?

Shanghai, China, Has the Lowest Confirmed Incidence of Childhood Diabetes in the World

http://care.diabetesjournals.org/content/17/10/1206.full.pdf

This proves that childhood diabetes in the western world is a social construct and it's all in our children's head. Most likely due conversion disorder caused by the subconscious frustration with the current medical system.

 

[SOC]

How well does Chronic Fatigue Syndrome fit this model?

CFS has no known organic cause. It is diagnosed on the basis of exclusion of other morbidities which otherwise might explain the presenting symptoms. To use Lynch’s general patterns of meme transmission, with some examples:

Family:
CFS clusters do occur in families, for no known cause.

Adversative. Preservational.
There is a large group of sufferers who vociferously deny the possibility of a psychosocial cause for their symptoms, and discount accordingly the value of psychosocial treatments, though the only evidence based treatment addresses such causes. These sufferers tend to regard their condition as beyond cure

Cultural Separatism.
Proselytive:
It is generally accepted that membership of a CFS peer group is a predictor of poor outcome of treatment, and it has been argued that this may be due to negativity within the groups as to diagnosis, treatment and prognosis. CFS groups often make extensive use of information technology to promote their ideas and activities.
Conversely, it has been suggested that being Asian (groups, arguably, whose distinctive cultural identities might well form barriers to memes) is a protective factor against CFS (4)

Motivational:
A medical diagnosis can help to secure benefits and insurance recognition/validation.

It seems unlikely that memes alone account for the aetiology of CFS: quite likely many factors combine to bring about the condition.

CFS might perhaps be most usefully thought of an emergent phenomenon, an ordered entity arising from a disordered combination of psychological, memeological, social and behavioural factors, much as a wave emerges from the complex, chaotic interplay of wind on water.

It does however seem reasonable to conclude that the transmission, retention and evolution of the defining characteristics of CFS, particularly perhaps in the group one might term ‘Psychosocial Deniers’ might usefully be viewed through the meme model lens.

Oops! Somebody wasn't paying attention in science class when "correlation is not causation" and "hypothesis is not evidence" was being taught.

Oh yeah, and "pulling *&*^ out of your *&^% is not science".

 

[chipmunk1]

Oops! Somebody wasn't paying attention in science class when "correlation is not causation" and "hypothesis is not evidence" was being taught.

Oh yeah, and "pulling *&*^ out of your *&^% is not science".

Don't tell the psychobabblers. They thought they were "producing" evidence once or twice a day.

 

[Sasha]

Doctors don't make money off the lab tests, the laboratories do. Doctors don't get paid more for giving more treatments, either. The pharmaceutical companies make more money, but that's hardly motivation for the doctor to order the treatment. Doctors don't have the freedom to order unvalidated lab testing or treatments willy-nilly; it all has to be approved by insurance companies who don't want to pay out any more than they have to. Those UK docs don't have a freakin' clue what they're talking about. It's like they think the US is some kind of medical fantasy world. If they think the medical streets are paved with gold in the US, maybe they should come over and see how they like it. We'd be glad to share our milk and honey. Our grass is greener, too.

Maybe this is partly my own misunderstanding of the US system that I was projecting onto UK doctors - I had thought there was a much higher level of private practice than here and that at some point in the process there were financial incentives for doctors to order tests and treatments. My bad! But I've repeatedly come across a dismissive "well, in the US they get patients to pay for all sorts of tests but they don't mean very much".

Where do your doctors get these insane ideas? Do they not teach critical thinking, logic, and the scientific method in UK schools? Or is it just that they un-teach these topics in UK medical schools? They must take at least one course every term in Misinformation and Delusional Thinking.

Dunno. Perhaps it's my misperception. I think another issue, though, is that in ME, US doctors have the freedom to order tests that are regarded as controversial here, such as the IgG test for HHV-6. UK doctors seem to have to stick to a list of trusted tests and anything off that familiar list is regarded with suspicion. In those cases, I don't know whether that's justified scepticism or ignorance (I'm no medical scientist).

 

[Sasha]

There's this comment from a patient on Action for ME's Facebook page:

I was utterly shocked and horrified to read this-as Dr Collings himself diagnosed me with ME/CFS five years ago!! How can he diagnose people with an illness he doesn't believe in??
It's beyond belief!

https://www.facebook.com/actionforme/posts/10152488135613209​

She's right. This whole sorry episode beggars belief.

 

[Min]

It is precisely the contemptous attitudes such as as those of Dr Collins, Dr Newton and Dr Lewis that leave myalgic encephalomyelitis feeling neglected, belittled and dismissed by the UK medical services and unable to access any effective treatment of any kind.


I have had 27 years of it.

 

[SOC]

Maybe this is partly my own misunderstanding of the US system that I was projecting onto UK doctors - I had thought there was a much higher level of private practice than here and that at some point in the process there were financial incentives for doctors to order tests and treatments. My bad! But I've repeatedly come across a dismissive "well, in the US they get patients to pay for all sorts of tests but they don't mean very much".

I don't think it's you, I've heard the same thing from other sources.

Dunno. Perhaps it's my misperception. I think another issue, though, is that in ME, US doctors have the freedom to order tests that are regarded as controversial here, such as the IgG test for HHV-6. UK doctors seem to have to stick to a list of trusted tests and anything off that familiar list is regarded with suspicion. In those cases, I don't know whether that's justified scepticism or ignorance (I'm no medical scientist).

It does seem to be true that US doctors have access to more tests than UK doctors. Since I don't think US doctors as a whole are incredibly ignorant about the value of certain tests, I think we can assume that while some of the tests might warrant a degree of skepticism, the majority make medical sense. Either that, or we have to assume that all UK medical schools produce much smarter and less gullible doctors than some of the best medical schools in the world.

 

[Sasha]

IIt does seem to be true that US doctors have access to more tests than UK doctors. Since I don't think US doctors as a whole are incredibly ignorant about the value of certain tests, I think we can assume that while some of the tests might warrant a degree of skepticism, the majority make medical sense. Either that, or we have to assume that all UK medical schools produce much smarter and less gullible doctors than some of the best medical schools in the world.

Health spending per capita in the US is more than double that in the UK:

http://en.wikipedia.org/wiki/List_of_countries_by_total_health_expenditure_(PPP)_per_capita

and what UK doctors are allowed to do is fairly tightly controlled by national guidelines so they're not going to have the chance to do a lot of the tests that US doctors can do. Maybe it's just lack of familiarity. But I do have the impression there's some real insularity.

Anyway, we're probably a bit off-topic now.

But I'd love to be able to roll up to a UK supposedly specialist ME/CFS NHS centre and get proper testing - NK cell function, tilt-table testing, the lot - and get some actual medical treatment. We're in the Stone Age here. When I see the high-quality biomedical research that gets reported at the IACFS/ME and IiME conferences, it seems like another planet.

 

[A.B.]

Simple, very cheap, and safe interventions such as B12 injections can improve quality of life for us but instead we get psychobabble that does nothing and costs a lot more. The whole story is bizarre even from an economic perspective. Seriously, a month of B12 injections costs like €12 in materials, and patients can be taught in a few minutes to do it themselves.

 

[SOC]

Health spending per capita in the US is more than double that in the UK:

http://en.wikipedia.org/wiki/List_of_countries_by_total_health_expenditure_(PPP)_per_capita

Yes, indeed! It's a huge flaw in our medical system. But it's a leap to assume that means that doctors get a personal financial benefit from testing and treatment.

Our health spending is outrageously high for two main reasons. First, medicine is a for-profit business in the US, unlike in the UK where it is socialized. That means there's a huge markup on all medical services to put profits in the pockets of the businessmen running medical businesses (hospitals, clinics, labs, pharmaceutical companies, insurance companies). Second, patients can, and do to a ridiculous extent, sue doctors and hospitals if they don't like the results they got. This requires doctors and hospitals to carry unbelievably expensive insurance to cover them in case they get sued. While sometimes the suits are entirely justified, all too often the suits are frivolous, but expensive to fight in court.

So it's not that doctors are lining their pockets by over-testing and over-treating. It's that businessmen are lining their pockets by raising the prices of all medical services in order to make huge profits.

and what UK doctors are allowed to do is fairly tightly controlled by national guidelines so they're not going to have the chance to do a lot of the tests that US doctors can do. Maybe it's just lack of familiarity. But I do have the impression there's some real insularity.

Anyway, we're probably a bit off-topic now.

Oops, you're right. That's what happens when I get to blathering on late at night. We can have mods look at this later and see if we need to be moved.

But I'd love to be able to roll up to a UK supposedly specialist ME/CFS NHS centre and get proper testing - NK cell function, tilt-table testing, the lot - and get some actual medical treatment. We're in the Stone Age here. When I see the high-quality biomedical research that gets reported at the IACFS/ME and IiME conferences, it seems like another planet.

And I'd love not to have to spend outrageous amounts for medical care and to get free social support services. Bottom line is, both systems have advantages and disadvantages. If only we could have the best of both. Now that would be some kind of heaven.

 

[Valentijn]

Second, patients can, and do to a ridiculous extent, sue doctors and hospitals if they don't like the results they got. This requires doctors and hospitals to carry unbelievably expensive insurance to cover them in case they get sued.

Part of the reason that payouts are so high is because there wasn't (and largely still isn't) any social support really in place for patients badly harmed by medical malpractice. If someone becomes incapacitated in the US, they'd be financially ruined and previously would have been unable to get health insurance as well.

So the calculated financial harm done to a patient would need to account for a lifetime of medical bills, house payments, and care costs.

 

[justy]

The UK is a magnificent country. It is, however, a relatively small piece of a large world. What kind of thinking allows them to dismiss the knowledge of the entire rest of the world simply because it didn't originate in their little corner of the world? I am sincerely baffled by this

I can see how they could delude themselves into thinking extensive testing for exclusionary conditions, which would be expected to come up negative if the patient has ME, is colluding with delusional patients, but how can positive test results showing clear abnormalities be seen as colluding with a delusion? Are the positive test results themselves a delusion? Are the doctors, labs, and lab equipment all caught up in some kind of mass hysteria that magically makes lab test results abnormal? Deluded machinery colluding with hysterical patients? Patients with the mental power to alter lab testing to produce false results? May I ask -- just where is the delusion here?

I have had NHS GP's dismiss positive test results from an M.E doctor as 'experimental' 'unverified' and one told me the report was 'too difficult' for him to read. When I asked for CO QIO as my non verified, experimental non NHS test had shown I was severely depleted in they refused, even though it is prescribable on the NHS.

As an aside - I live very near to the welsh GP who posted a RR and has been much discussed here. Luckily not my GP practice, but I had thought in the past it would be a nice town to live in...not now though!

 

[zzz]

I have had NHS GP's dismiss positive test results from an M.E doctor as 'experimental' 'unverified' and one told me the report was 'too difficult' for him to read.

There are so many tactics that doctors use to deal with undesirable test results. Here in the U.S., I told my doctor about my nuclear medicine test that showed my blood plasma volume was more than 30% below normal. His response? "Oh, those tests aren't very accurate." (This is a $2000 test he's talking about.)

Now what can one say to that?

 

[biophile]

Some tests may be unreliable, but they should at least be considered or redone with accepted tests without all the attitude. I had a doctor dismiss tests without looking as "how do I know you didn't just make them up on your computer"? Then I got some lecture about how his job was to distinguish between organic vs functional illness (sending the latter to psychiatrists).