What exactly *is* the biopsychosocial model of ME ? (Poll included)

[Hip]

What I've been hearing a lot from the BPS squad lately is that they believe it is a BIO trigger (e.g. EBV) that causes temporary fatigue. This fatigue is eternalized by PSYCHOLOGICAL and SOCIAL aspects in the life of the patient.

This pretty much the along the same lines as Simon Wessely's oddball ideas, that initially your illness may be triggered by a virus, and you then acquire the belief that you are ill; but then later when the virus clears, you do not let go of this belief that you are ill, and it is this belief alone which causes your continued symptoms. This is how silly Wessely explains ME/CFS.

Of course, if Wessely's ideas were true, then anyone with a bacterial infection who was surreptitiously given antibiotics to clear the infection would also not get better, because according to Wessely, their symptoms would remain due to the belief they are still infected.

 

[A.B.]

Yes, this is a good question. If someone finds a biological root cause for fatigue à la mitochondrial myopathy, does that invalidate BPS or merely relegate it to perpetuating factor?

It's a good question for a BPS believer. Is there anything that can explicitly disprove that a psychosocial factor plays any role in any illness?

 

[Wolfiness]

Let me ask the question a different way.

Are there any diseases which aren't biopsychosociable?

Does biopsychosocial simply mean that no disease is purely physical?

Do all chronic or disabling diseases become biopsychosocial?

Are some diseases are more obviously biopsychosocial than others? Where would ME sit on the continuum?

 

[duncan]

Wonder how the BPS school explains death. Is death caused by a biological function, and then perpetuated by psychological and social factors?

 

[Wolfiness]

This pretty much the along the same lines as Simon Wessely's oddball ideas, that initially your illness may be triggered by a virus, and you then acquire the belief that you are ill; but then later when the virus clears, you do not let go of this belief that you are ill, and it is this belief alone which causes your continued symptoms. This is how silly Wessely explains ME/CFS.

Of course, if Wessely's ideas were true, then anyone with a bacterial infection who was surreptitiously given antibiotics to clear the infection would also not get better, because according to Wessely, their symptoms would remain due to the belief they are still infected.

I'm pretty sure there is evidence as part of placebo/nocebo research that people treated surreptitiously with genuine medication don't respond as well as people treated overtly with it.
www.ncbi.nlm.nih.gov/pubmed/15488461

 

[Effi]

@wolfita In most health care systems there is something called 'psychosocial services'. This consists of supporting patients of any disease in any psychosocial aspect of their life that has been affected by their illness. In our society, virtually everything has psychosocial aspects to it. I don't think there is any disease that doesn't impact a patient's psychosocial life in some way or other, big or small.

But what BPS says is that it's the psychosocial aspects of life that perpetuate illness. They turn everything upside down, and they don't feel the need to prove the validity of their model. The fact that BPS is active even in such obviously physical illnesses like cancer or MS, shows that their hypothesis is highly flexible and can fit any kind of ailment.

 

[Wolfiness]

It used to be that ME was simply a belief that someone had ME, which could be drummed out of them by exercising them back to health.

It now appears to be some kind of complex interplay between this idea and some undefined and hazy physical elements that probably have something to do with deconditioning, which can only be drummed out of patients very gradually with potential setbacks.

But they do say, "Oh no no, we never said it was purely psychiatric." So have they changed their minds - which is nothing to be ashamed of? Or did we misunderstand them in the first place? I have this feeling that they tried to oversimplify by presenting us with the purely psychiatric model in case we were too stupid to understand BPS, and that backfired…

@wolfita In most health care systems there is something called 'psychosocial services'. This consists of supporting patients of any disease in any psychosocial aspect of their life that has been affected by their illness. In our society, virtually everything has psychosocial aspects to it. I don't think there is any disease that doesn't impact a patient's psychosocial life in some way or other, big or small.

But what BPS says is that it's the psychosocial aspects of life that perpetuate illness. They turn everything upside down, and they don't feel the need to prove the validity of their model. The fact that BPS is active even in such obviously physical illnesses like cancer or MS, shows that their hypothesis is highly flexible and can fit any kind of ailment.

Yes - what bothers me is that other biopsychosocial diseases get funding for their bio, and ME just gets all the emphasis on the psycho and the social, without any proof that the bio is any less important.

 

[Effi]

Yes - what bothers me is that other biopsychosocial diseases get funding for their bio, and ME just gets all the emphasis on the psycho and the social, without any proof that the bio is any less important.

That's what BPS is good at: filling the void. They will jump in to 'explain' any and everything that real science hasn't been able to explain yet. Once science does catch up on our field, BPS will vanish into thin air. And leech onto their next victim.

You are trying to grasp the essence of BPS, but the fact of the matter is that they bend linguistics so that you will never grasp the essence. All words are twisted, all concepts can be interpreted endlessly, it's almost like a different language. And that's how they get away with it, even if it's proven that they're blatantly wrong. It's like trying to hold an eel with your bare hands.

 

[Wolfiness]

@wolfita
In your question at the beginning of this thread, you may be mixing up two related things: the biopsychosocial model, and central sensitivity syndrome.

As mentioned above, the biopsychosocial model is a means that major insurance corporates use to avoid paying of disability support to patients with severe diseases such as ME/CFS. The university departments promoting the biopsychosocial model are set up and paid for by disability insurance companies.

Whereas central sensitivity syndrome (also called central sensitization syndrome) is a scientific idea that, as its name suggests, posits there is excessive sensitivity to sensory inputs into the brain, such that what a person experiences is far in excess of the sensory signal.

So in the case of pain signals, for example, the idea of central sensitivity is that the pain signal from a minor pain in the body may be hugely amplified by some unknown pathological mechanism such that it now feels like very severe pain.

There is not much scientific evidence to back up the concept of central sensitivity, but it is proposed as a conceptual framework for understanding diseases such as ME/CFS, fibromyalgia, irritable bowel syndrome, interstitial-cystitis.

There is a thread on central sensitivity syndrome here, and a short introductory article here.

To understand central sensitivity properly, you need to view it in the context of functional disorders and somatoform disorders, because central sensitivity provides a possible hypothesized explanation of functional disorders. A definition of functional disorders and somatoform disorders is given in this post.



The relationship between the biopsychosocial model and central sensitivity syndrome is that the BPS people seems to want to incorporate central sensitivity into their model. Again, I expect this is because central sensitivity may lend an air of academic respectability to this biopsychosocial money-saving scam.

Yes, I thought neurological fatigue overperception, together with cytokines, was central to the BPS CFS/ME model. I thought BPS was a more biomedical model than functional/somatoform.

 

[worldbackwards]

But they do say, "Oh no no, we never said it was purely psychiatric." So have they changed their minds - which is nothing to be ashamed of? Or did we misunderstand them in the first place? I have this feeling that they tried to oversimplify by presenting us with the purely psychiatric model in case we were too stupid to understand BPS, and that backfired…

Yes - what bothers me is that other biopsychosocial diseases get funding for their bio, and ME just gets all the emphasis on the psycho and the social, without any proof that the bio is any less important.

You answer your own question there. The point is: if they really thought it wasn't purely psychological, why dwell on it so wholeheartedly? Any confusion here has always essentially been backtracking in the face of a reality that wouldn't fit in with the theory that they so desperately cling on to.

"Biopsychosocial" is simply a fancy frame with which to dismiss all concerns. It's a rhetorical device which allows them not to address the weaknesses in their argument, where every answer can be "blah blah mysterious power of the mind over the body" without either demonstrating what this power is or trying to examine (or treat) it's actual effects.

 

[Research 1st]

I may be the only person on this forum who has met these award winning BPS theorists in person, so let me tell you why I chose 'D' something else to respond to what is the BPS mode of CFS.

In person, in a clinical setting (Hospital), the Bps model theorists are always dangerous to patients with misdiagnosed F48,0 Chronic Fatigue because they:

Order Nurses not to take of blood pressure, pulse, respiration rate - denying you future proof in court you were ill.
Prevent you seeing to a doctor to discuss your medical symptoms - denying possibility to override BPS CFS idea.
Deny medications, such as pain control. - making you more compliant to torture (GET) as you befriend them.
Block access to a specialist - stopping you getting moved to another ward for new tests.

All of these factors (and many many more) cause you the patient to become despairing and you agree to do ANYTHING to please them. I don't mean in days of an admission, I mean months. It takes months to break someone psychologically tough (like we all are from years or decades of chronic ill health).

BPS CFS theory of ME treatment, is an effective form of brain washing as you feel so helpless in their company, you will do anything to please them and, naturally, this means ACTIVITY for them, irrespective if you can't move afterwards, eventually you DO sit/stand/walk and you have NO PROOF anything is happening to you as they deny taking of blood pressure, pulse etc. Overtime, you see them as friends, and may even become attracted to them visually as everything you do, is based on them praising you for making you more ill. It becomes an addiction.

This is how they get you down a gym or on an exercise bike, because it's for THEM, you SUFFER for them. This makes them happy, and so you feel self worth under their watch, during this moment, not afterwards, only during.
Afterwards you have to pay, as naturally you can barely move/speak from the pain and exhaustion.

If this sends a chill down your spine, it will make you even more interested to here the people who did this to me, are very close to home when it comes to UK 'biomedical research' centers of excellence such as autoimmunity.They infiltrate so easily, because of who funds them.

You may say, why didn't I call the Police on these psychopaths who did this to me? Answer: No one cares.
As a PWME you are a presumed liar, a fantasist, a dreamer. And so they do this to the next patient, and the next.
The offenders, set themselves up as victims and you are seen as the offender, the crazy one who makes outrageous claims of malpractice. How convenient then, that by having no tests, no health monitoring by complete chance, it's your word against theirs. Who's going to get believed?

So answer 'D' which is other, should really say, the BPS model of CFS is a religious belief that the ME patient has a belief in ME, which is Chronic Fatigue maintained by abnormal illness beliefs, leading to physical symptoms from poor physical conditioning based on fear of activity.

Through physical and mental abuse (GET via coercion using CBT), the patient WILL do more, and thus they are declared neurotic all along, and they are right and you are wrong. This doesn't negate the fact someone with cancer can be brainwashed into walking across the room and back (proving nothing about cancer) but for BPS CFS, this is all the proof they need to demonstrate to other members of staff you are faking it and can do it you try.

Exacerbation of symptoms you are told is NORMAL, and relapse you are told is TEMPORARY and will only get BETTER the more GET you do. Except this is a lie, in the same way gradually eater sugar doesn't make Diabetes better.

In clinical practice, THAT is what the BPS model of CFS feels like, and operates as, when given to people with bedridden severe ME, with no prior history of mental illness and who are admitted due to medical emergencies to the Hosptial into ER which without ER intervention are life threatening.

What ME patients rarely consider is, what happens if you are too weak to be sent home, and you are admitted to the Hospital. If they can't 'fix' you, what ward do they put you on? If it's the pych ward, that's what happens to you.

How in heaven's name you end up in ER into CCU into a Psych Ward, I don't know but it happens all over the UK, because the cardiac cause cannot be found (Dysautonomia is neurocardiogenic and not heart 'disease') and so all of your symptoms fit in perfectly with anxiety/panic disorder, into mood disorder, into F48.0 PACE criteria CFS, that they call CFS/ME but they really think of as Chronic Fatigue (F48.0).

BPS model of CFS is Chronic Fatigue F48.0 and presumed mental illness due to mind-body derangement from stressful life events and childhood trauma. If you haven't gone one, they create one, and you come out the Hospital traumatized anyway.

Imagine spending 6 months with these people, with each day (sans weekends when the place is deserted) them convincing you, you're a deranged person who is 'mistaken' that ME CFS is a biomedical neuroimmune disorder. I have, and look what happened to me.

Because of these crazed individuals, I can't accept other people's friendship or love and life a lonely life onto of living a lonely life. Because of them I can't trust anyone, don't believe people who offer me compliments and never will be able to have a partner again, as I see them in everyone now. I see the potential for human deception, in others, because they are experts in deception. They promise you everything (a possible cure) and you come out with NOTHING, only worse, and only with your relationship in tatters.

I can't tell you the names of the people but you might guess, and they are highly dangerous because they are so charming, smiling, polite and all along, all along, their plan is to destroy your organic disease legitimacy not just with your own mind, but with your family. They do this by stating, without compromise, your entire experience of a life destroying illness is your fault, and you hold they key to recovery, which is your mind overcoming normal symptoms, experienced by you as abnormal.

That's what BPS CFS is, in clinical practice, in Hospital when you infuriate them with no abnormal mental history and can't or won't be dosed up on sleeping tablets an antidepressants. When they find that out, all they do is lie and fabricate who you were in the past and who you are now. It suits an agenda, an insidiously poisonous, antithesis to how doctors should practice medicine.

BPS theory of CFS = Compassionate abuse.

 

[Comet]

It's based on their ideas that doctors are gods, imo. If a patient presents with symptoms they can't immediately identify, since they are all-knowing, the thing causing the symptoms clearly can not exist.

Therefore, it is the patient who is deficient and not the doctor. In addition, one of their clan can swoop in and gain profession recognition when they present some convoluted and un-dis-provable theory about we have physically manifested our emotional traumas into illness.

Then they can all ooh and ahh at their cleverness and slap each other on the back while gossiping about how screwed up we are.

But I might be a little jaded.

 

[cmt12]

Yes - what bothers me is that other biopsychosocial diseases get funding for their bio, and ME just gets all the emphasis on the psycho and the social, without any proof that the bio is any less important.

To continue the bank analogy, other illnesses such as cancer would be like a bank robber with heavy weaponry entering the bank forcefully and blatantly stealing money from our account. There is no question who the perpetrator is.

ME/CFS, fibromyalgia, etc are like an elaborate scheme that is secretly and carefully carried out in which -- even though there may be signs pointing to a crime being committed -- the criminal leaves no evidence that can lead back to him.

 

[GreyOwl]

@Research 1st, I know that everything you wrote is true.

 

[Dolphin]

I'm pretty sure there is evidence as part of placebo/nocebo research that people treated surreptitiously don't respond as well as people treated overtly.
www.ncbi.nlm.nih.gov/pubmed/15488461

I think it's important to distinguish between placebo effects on subjective outcomes and placebo effects on objective outcomes. The study showed conflicting results based on the type of outcome measure.

N Engl J Med. 2011 Jul 14;365(2):119-26. doi: 10.1056/NEJMoa1103319.
Active albuterol or placebo, sham acupuncture, or no intervention in asthma.
Wechsler ME1, Kelley JM, Boyd IO, Dutile S, Marigowda G, Kirsch I, Israel E, Kaptchuk TJ.
Author information

Abstract
BACKGROUND:
In prospective experimental studies in patients with asthma, it is difficult to determine whether responses to placebo differ from the natural course of physiological changes that occur without any intervention. We compared the effects of a bronchodilator, two placebo interventions, and no intervention on outcomes in patients with asthma.

METHODS:
In a double-blind, crossover pilot study, we randomly assigned 46 patients with asthma to active treatment with an albuterol inhaler, a placebo inhaler, sham acupuncture, or no intervention. Using a block design, we administered one each of these four interventions in random order during four sequential visits (3 to 7 days apart); this procedure was repeated in two more blocks of visits (for a total of 12 visits by each patient). At each visit, spirometry was performed repeatedly over a period of 2 hours. Maximum forced expiratory volume in 1 second (FEV(1)) was measured, and patients' self-reported improvement ratings were recorded.

RESULTS:
Among the 39 patients who completed the study, albuterol resulted in a 20% increase in FEV(1), as compared with approximately 7% with each of the other three interventions (P<0.001). However, patients' reports of improvement after the intervention did not differ significantly for the albuterol inhaler (50% improvement), placebo inhaler (45%), or sham acupuncture (46%), but the subjective improvement with all three of these interventions was significantly greater than that with the no-intervention control (21%) (P<0.001).

CONCLUSIONS:
Although albuterol, but not the two placebo interventions, improved FEV(1) in these patients with asthma, albuterol provided no incremental benefit with respect to the self-reported outcomes. Placebo effects can be clinically meaningful and can rival the effects of active medication in patients with asthma. However, from a clinical-management and research-design perspective, patient self-reports can be unreliable. An assessment of untreated responses in asthma may be essential in evaluating patient-reported outcomes. (Funded by the National Center for Complementary and Alternative Medicine.).

 

[Dolphin]

But is it? He says in the PACE trial write up that GET didn't work for everyone and new treatments are needed. We can't effectively oppose something if we mischaracterise what it is.

My reading of it was they may have been referring to variations of the same theme, that it wasn't necessarily that they believed totally new therapies were required.

Have you seen him say that the CBT/GET model doesn't apply to some ME/CFS patients? I don't recall him saying any thing like that.


From the Pace Trial manual

Theoretical model

GET assumes that CFS/ME is perpetuated by deconditioning (lack of fitness), reduced physical strength and altered perception of effort consequent upon reduced physical activity. A normal process of adaptive change in the body is assumed to occur as a consequence of rest or a reduction in physical functioning, i.e. weakening of muscles, reduction in fitness, ('use it or lose it') and altered perception of effort. Activity can then produce symptoms as a result of these negative changes, as the body is attempting a physical activity beyond its current capacity. These changes are thought to be reversible, and thus improving fitness and physical functioning will alter perception of effort, enable the body to gain fitness and strength, leading to a reduction in symptoms and an increase in activity capacity ('use it and gain it'). Preliminary research suggests that reduced symptoms arise from simply doing a GET programme, rather than necessarily getting fitter, whereas improved function is related to getting fitter and stronger. Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology. A mild and transient increase in symptoms is explained as a normal response to an increase in physical activity.

There may be other mechanisms involved in the success of GET apart from reversing deconditioning, including elements of habituation, and positive effects of re-engagement with important activities. GET has also been shown to improve sleep, cognition, and mood; factors that are also likely to perpetuate the condition, although these are not directly addressed by the treatment.

 

[Wolfiness]

It's a chilling story, @Research 1st, I'm so sorry for you and none of us doubt huge harm has been done. I am also very severely ill. It's a travesty that medicine has been twisted so that I feel grateful and surprised when a doctor takes the fact that I don't appear to be depressed as an indication that I'm not depressed, or takes the fact that psychological interventions didn't work to mean that the treatment failed me and not vice versa. I believe the Norwegian medical authorities have already apologised to their ME population and ours should too.

 

[Dolphin]

I can't tell you the names of the people but you might guess, and they are highly dangerous because they are so charming, smiling, polite and all along, all along, their plan is to destroy your organic disease legitimacy not just with your own mind, but with your family. They do this by stating, without compromise, your entire experience of a life destroying illness is your fault, and you hold they key to recovery, which is your mind overcoming normal symptoms, experienced by you as abnormal.

Useful description.
Sorry to read what you went through. But it doesn't surprise me given their views.

 

[Wolfiness]

Have you seen him say that the CBT/GET model doesn't apply to some ME/CFS patients? I don't recall him saying any thing like that.

AFAIK just this:

"Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed. The effectiveness of behavioural treatments does not imply that the condition is psychological in nature.
…
The PACE findings can be generalised to patients who also meet alternative diagnostic criteria for chronic fatigue syndrome and myalgic encephalomyelitis but only if fatigue is their main symptom."

Http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext

I recently had voluntary private Graded Activity (not exercise) treatment with an occupational therapist who took part in PACE. She was very nice but let's just say I've met OTs that I had more faith in and I think partly because of this I just couldn't get myself to keep to the rest schedule so the treatment didn't get anywhere.

 

[Dolphin]

Have you seen him say that the CBT/GET model doesn't apply to some ME/CFS patients? I don't recall him saying any thing like that.


From the Pace Trial manual

AFAIK just this:

"Our finding that studied treatments were only moderately effective also suggests research into more effective treatments is needed. The effectiveness of behavioural treatments does not imply that the condition is psychological in nature.
…
The PACE findings can be generalised to patients who also meet alternative diagnostic criteria for chronic fatigue syndrome and myalgic encephalomyelitis but only if fatigue is their main symptom.

Http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext

That statement is very vague. Doesn't mean they believe the model is incorrect in my mind.

I have read pretty much all of Peter White's published work on CFS and also keep an eye out for other statements he makes. I haven't seen any major change.