BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

[Valentijn]

ME is definitely a biopsychosocial illness.

I would clarify a bit - it's biopsychosocial only to the same extent as everything else involving humans. The universal presence of biological, social, and psychological factors in everyone's life makes the "biopsychosocial" concept rather trite, and ultimately irrelevant. It's like saying a disease involves oxygen, or water, or cells.

Accordingly, I think it's a pretty quackish concept in the realm of medicine even when not abused by the psychobabblers. BPS is a philosophy, and has no meaningful impact upon a disease beyond what it has upon every other aspect of life.

 

[trishrhymes]

ME is definitely a biopsychosocial illness. This isn't the same as thinking that psychological therapies can make us better.

I'd agree if we stick to Engel's original intentions with the term biopsychosocial. Unfortunately that's not how the term is used now.

Therefore, in today's terminology I'd say ME is a biological illness.

I think the origin of the concept with Engel in about 1970 is fascinating - the example he gives is of a hypothetical man having a heart attack (biological factor). His interpretation of the chest pain (psychological factor) affects how quickly he goes for help, and the response of the hospital staff, eg a mistake or delay (social factor), effects the outcome. Thus it is not his belief in itself that alters the outcome, but the way it influences how quickly he goes for help.

In that sense, his heart attack and every other illness is biopsychosocial. Engel's aim was to highlight that doctors should not just look for biological factors such as blood pressure and blood tests, but should look at psychosocial factors which may alter his chances of recovery, eg will a patient take the pills he is prescribed, does he live in a freezing house, does he eat a healthy diet etc.

The BPS clowns we know and love (!) have taken this to the extreme of forgetting the biological altogether, or paying lip service to it while ignoring the evidence that, for example aerobic exercise is detrimental.

They have made up a theory that it is a psychosocial illness caused by a (hysterical) fear of exercise and false illness beliefs which can be cured by persuading patients they have no biological illness and getting them to exercise. They try to give it legitimacy by using fancy terms including somatisation, conversion disorder and the biopsychosocial model. This made up theory has no proof, and all the research both biological and clinical trials of CBT and GET prove it wrong.

So although, in Engel's terms ME, like all illnesses, is biopsychosocial, that is different from the now more common use of the term biopsychosocial for illnesses that doctors and insurance companies and government benefits departments decide aren't real and blame the patient if they don't get better.

On those grounds, I refuse to call ME a biopsychosocial illness.

The modern version of the biopsychosocial model is a belief system about unexplained chronic symptoms, which is unproven, unprovable, and wholly detrimental to patients, leading to prescription of unproven psychological therapies instead of proper medical investigation.

 

[Snow Leopard]

Yes, the problem is that everyone "agreed" with Engel, slapped themselves on the back and said, hey, all our disciplines are useful. But then it became business as usual, no need for change, no need to do cross-discipline work. Consequently we (scientists, doctors and patients) utterly failed to actually build the deep, biopscyhosocial models that Engel envisioned as a result.

 

[Ambrosia_angel]

At the end of the day I'm sure we are all very happy that Nicola has improved at that she remains better.

It's most likely that she either doesn't have ME or maybe her other illnesses such as depression had a stronger impact on her physical wellbeing than her ME ever did.

I'd rather someone NOT have ME and benefit from the mindfulness techniques then have ME and realise that the mindfulness techniques did very little to them in the end or in fact make them worse.

I wish @Njsingleton all best with your recovery. At the end of the day it's about your health and not what anyone else thinks. The only thing I would suggest is to be careful at saying that this clinic helps ME because of the negative way things like that can affect PWME. Sadly studies show otherwise. Good luck for the future!

 

[Large Donner]

One of the main problems with these "if you believe hard enough" mantras pushed by psychologists onto patients is that it puts patients into a position whereby they can start to speak using someone elses thoughts whilst being in denial about the true state of their actual health.

At the same time often they can be saying things like "I'm on my way to recovery", because they have decided to believe in the claimed treatment process. We have seen patient after patient come back a few months later and say they have had a relapse and infact under true examination, often, there was little if any improvement ever.

One of the tell tale signs is when people start to say things like "in order to make a full recovery one has to ......", when they themselves have not made such a recovery.

So really the process is just a faith based belief system rather than a first hand experience.

In essence this is what CBT is quite often, just a process of changing the way someone responds to a questionnaire absent any objective evidence of improvement, whilst allowing the practitioner to tick boxes and make curative claims.

 

[Valentijn]

One of the main problems with these "if you believe hard enough mantras" pushed by psychologists onto patients is that it puts patients into a position whereby they can start to speak using someone elses thoughts whilst being in denial about the true state of their actual health.

I have no doubt that therapists told the patient that it was her attitude that was keeping her ill, prior to her doing the same thing to other patients. Patients are being abused by such blame-centered approaches, and they are being taught to abuse other patients as a result. It's a pretty awful situation for them to be in, and I hope they can get through it in one piece.

 

[Mrs Sowester]

Poor brainwashed Nicola. She needed easing out of the cult gently.

 

[slysaint]

I have no doubt that therapists told the patient that it was her attitude that was keeping her ill, prior to her doing the same thing to other patients. Patients are being abused by such blame-centered approaches, and they are being taught to abuse other patients as a result. It's a pretty awful situation for them to be in, and I hope they can get through it in one piece.

The OHC go one step further and offer to train patients as counsellors/therapists for them (at a cost of course) saying that it will not only give them a fullfilling job but aid them on their road to recovery.
I have questioned before if this classifies as a pyramid scheme?

 

[bertiedog]

Poor brainwashed Nicola. She needed easing out of the cult gently.

Personally I find that remark quite offensive to @Njsingleton and I am not at all impressed on the way she has been treated and it isn't the first time that when new people come onto PR they are treated in a similar fashion. Obviously they soon disappear.

I don't feel that anyone of us has the right to judge anybody else. Nicola wasn't in charge of the way the BBC portrayed her illness and what was the cause of her improvements. She is entitled to state here what she feels has been of benefit to her without being quite harshly 'attacked' for what she has experienced.

Let's just be gracious enough to be pleased that as she says she is feeling better although definitely she still suffers from illness. It obviously doesn't work for everyone but its good to know that the approach used by the doctor in the programme does indeed benefit others.

Pam

 

[Mrs Sowester]

@bertiedog I meant it. I believe she was brainwashed and she should have been dealt with more gently here.
When new members join PR they often believe some aspects of the psych model. They tend to lose those beliefs over time when presented with science. They don't tend to get hit with so much truth in such a short time!

 

[Undisclosed]

Personally I find that remark quite offensive to @Njsingleton and I am not at all impressed on the way she has been treated and it isn't the first time that when new people come onto PR they are treated in a similar fashion. Obviously they soon disappear.

I don't feel that anyone of us has the right to judge anybody else. Nicola wasn't in charge of the way the BBC portrayed her illness and what was the cause of her improvements. She is entitled to state here what she feels has been of benefit to her without being quite harshly 'attacked' for what she has experienced.

Let's just be gracious enough to be pleased that as she says she is feeling better although definitely she still suffers from illness. It obviously doesn't work for everyone but its good to know that the approach used by the doctor in the programme does indeed benefit others.

Most people who come to PR and then disappear are those who claim cures from lifestyle changes and then get upset because members don't agree.

Most of us have little or no patience for these kind of claims.

It's really hard to be polite when you feel angry and frustrated. Some go way too far.

I don't think Njsingleton was treated badly overall. There were a few comments that were borderline but when a member says that an attitude will keep you ill that is really provocative and likely to set off members. If there is no statement to clarify what they meant members will be upset. It is absolutely horrendous to be told either directly or indirectly the thoughts you are having are keeping you sick.

Yes a member is entitled to state what has been of benefit and in return members are allowed to say if they agree or disagree, and state how they feel about the statements.

Do we have to remain silent if we think somebody has received somewhat bogus treatments from a questionable organization.

I watched the BBC show and I was really disappointed in it. I am glad Nicola filled in the rest of the story but I don't feel able to embrace the treatments she got because some of them are quite quacky and most if not all are unproven. But seriously who gives a shit, she is feeling better, that's what is important. I can say I am glad she is feeling better but I am not willing to say it was down to the treatments she got. There was a lot going on there. Likely some misdiagnoses, she was on a shit load of meds and that would have caused a whole other set of symptoms and side-effects. The bottom-line is ME patients do not get better by applying lifestyle changes. Why -- well because ME is not caused by a bad lifestyle.

I remember as a nursing student, I was exhausted. I worked long hours with variable shifts in hospitals, I held down a part time job, I didn't eat or sleep properly. Guess what, when I slept, had summer holidays, ate properly etc, I felt totally better. I wasn't ill, I felt like shit because of what I was doing in my life. ME and Fibromyalgia are not illnesses brought around by a bad lifestyle. Those who believe it is are woefully misinformed.

@bertiedog I meant it. I believe she was brainwashed and she should have been dealt with more gently here.
When new members join PR they often believe some aspects of the psych model. They tend to lose those beliefs over time when presented with science. They don't tend to get hit with so much truth in such a short time!

In all my years as a R.N., I have never encountered a patient who actually could change their physical symptoms via beliefs. It is so sad that some of those who provide 'treatments' for ME blame the patient when they don't improve. I couldn't imagine looking after a cancer patient, which I had many of, and telling them the reason their cancer is continuing to grow is because they aren't trying hard enough or that attitude is maintaining their illness. That is shit. I can see why members got upset at Njsingleton for some of her statements whether she meant them or not. I would rather she stay around so we can actually have a conversation -- to understand each other, educate each other and most of all be tolerant of each other's feelings. Yes, anger is uncomfortable and sometime misdirected it but aren't we entitled to it to some degree.

We can be gentle but sometimes people just don't feel like it.

 

[Large Donner]

I don't feel that anyone of us has the right to judge anybody else.

I agree, thats why remarks like these are not acceptable...

That attitude is what will keep you ill.

Nicola wasn't in charge of the way the BBC portrayed her illness and what was the cause of her improvements. She is entitled to state here what she feels has been of benefit to her without being quite harshly 'attacked' for what she has experienced.

I agree except for the issue is that someone is not entitled to assume and tell everyone else that those treatments particularly psychological ones is what will fully recover all of us and that its our attitude that is preventing us from being fully recovered or recovering somewhat.

Let's just be gracious enough to be pleased that as she says she is feeling better although definitely she still suffers from illness. It obviously doesn't work for everyone but its good to know that the approach used by the doctor in the programme does indeed benefit others.

Lets not forget that no one here personally "attacked" Nicola. What did actually happen was that, with perfect entitlement, lots of people objectively challenged "her" claims (which many of us feel are second hand claims of quackery using NLP manipulated into to some patients beliefs) particularly of psychological "treatments" in ME and what they can achieve in comparison to her claims that such things can and will lead to a full recovery, even though she fully admits to not to being fully recovered herself, whilst at the same time telling other people that they will have their "recovery" affected by disputing certain claims because of their attitude.

Often in dialogue and discussion we really need to separate the content of a dialogue from claims of "attacks" which can lead to an emotional based response to something that was never said in the first place.

 

[dangermouse]

The bottom-line is ME patients do not get better by applying lifestyle changes. Why -- well because ME is not caused by a bad lifestyle.

Spot on.

 

[A.B.]

Yes, the problem is that everyone "agreed" with Engel, slapped themselves on the back and said, hey, all our disciplines are useful. But then it became business as usual, no need for change, no need to do cross-discipline work. Consequently we (scientists, doctors and patients) utterly failed to actually build the deep, biopscyhosocial models that Engel envisioned as a result.

Did Engel really envision deep biopsychosocial models or did he, as psychoanalyst after the discreditation of psychoanalysis, need a new rationale for continuing to see patients with physical symptoms?

 

[Ambrosia_angel]

I think this thread is really telling. I wonder if patient claims of success are a big reason why these treatments are pushed so much. Even though overall most patients don't recover, the anecdotal recovery stories are pushed so much that it keeps it going.
The most disturbing thing of this all is that they allow patients to become therapists?

They encourage patients to sign up for the program based on their own personal experiences. That means that your therapist will be spewing out how much they recovered using the same treatments whilst treating you. Which creates an extremely personal bond and more of a reason to trust the therapist. Scary! No wonder people are making such horrible comments like that.

It's actually a smart model when you think about it but also very dangerous. Now I realise by biomedical research is so bad in the UK. Is this NHS funded? I wonder if anyone on PR has recounted their experiences of this specific program.

My ME has improved but CBT, GET, psychotherapy, and amitripyline made no difference and made me worse. I honestly don't know why someone would go to the OHC when they've likely been given the same treatment on the NHS. It's the exact same thing but repackaged. Definitely gives of a pyramid scheme vibe.

 

[Ambrosia_angel]

Here are the studies that they site to prove that their treatments work

http://www.theoptimumhealthclinic.com/research-overview/publications/

They don't have any actual research and what they do have is based off the conclusion that the patient "perceived" that they were better and this is after a short term follow up.

 

[slysaint]

Here are the studies that they site to prove that their treatments work

http://www.theoptimumhealthclinic.com/research-overview/publications/

They don't have any actual research and what they do have is based off the conclusion that the patient "perceived" that they were better and this is after a short term follow up.

Actually they also have their own Research Department:
http://www.theoptimumhealthclinic.com/research/

"The Optimum Health Clinic Research Department has enjoyed various collaborations, including with The School of Psychology’s Chronic Illness Research Team (CIRT) in the University of East London. As a follow on to a prospective preliminary study published in the BMJ Open in 2012, the team have recently started a three year collaboration with University of Surrey to complete a randomised controlled trial on the OHC approach."

They have also been in discussions with the DoH to try and get their treatment funded on the NHS:

"The goal is that this will be a significant step towards government funding being available for treatment at OHC."

It's big business.

 

[Ambrosia_angel]

Actually they also have their own Research Department:
http://www.theoptimumhealthclinic.com/research/

"The Optimum Health Clinic Research Department has enjoyed various collaborations, including with The School of Psychology’s Chronic Illness Research Team (CIRT) in the University of East London. As a follow on to a prospective preliminary study published in the BMJ Open in 2012, the team have recently started a three year collaboration with University of Surrey to complete a randomised controlled trial on the OHC approach."

They have also been in discussions with the DoH to try and get their treatment funded on the NHS:

"The goal is that this will be a significant step towards government funding being available for treatment at OHC."

It's big business.

Yes I came across this study when I was looking. I have a hard time believing that they haven't done a one year follow up on patients yet. They've been open for long enough. It's most likely that they didn't see any objective improvements in patients so not they need the help of a university to help alter their results like they did with the PACE trial. I wonder if they're truly expecting a good outcome. These people are deluded!

 

[slysaint]

Here are the studies that they site to prove that their treatments work

http://www.theoptimumhealthclinic.com/research-overview/publications/

They don't have any actual research and what they do have is based off the conclusion that the patient "perceived" that they were better and this is after a short term follow up.

I had to laugh at their conclusion of the pilot study done in 2014:
"The study found significant improvements in participants belief they could change their situation and the symptom of sleep after only 8 weeks"

Just how do you objectively measure belief? And since when is improvements in belief a sign of recovery?

 

[Undisclosed]

I had to laugh at their conclusion of the pilot study done in 2014:
"The study found significant improvements in participants belief they could change their situation and the symptom of sleep after only 8 weeks"

Just how do you objectively measure belief? And since when is improvements in belief a sign of recovery?

It's not the patient's beliefs they are measuring, it's their own.