Dr Amolak Bansal & Jorgen Jelstad TV interview at ME conference/Dr Bansal's research

[MeSci]

If ME was just about cortisol abnormalities, we'd all be healthy and getting on with our lives right now. The whole cortisol/aberrant stress response as the primary cause of ME symptoms theory is ancient. The top clinicians moved past that one years ago. Yeah, some of us have cortisol abnormalities. Fine. Treat them. Guess what? That doesn't begin to eliminate most ME symptoms.

Treatment is not necessarily a simple reversal of cause. We all know that corticosteroid treatments are fraught with adverse effects, even if someone is low in cortisol.

A combination of long-term abnormalities (perhaps including genetic predispositions) and more-recent issues such as infection, physical trauma, and perhaps chronic stress and persistent over-exertion (resulting in chronically-raised cortisol) can lead to further issues down the line, which in turn can lead to yet further issues. So clearly those issues that have developed over time cannot be fixed by addressing just one of the triggers.

In addition, physiology is a web, not a linear system, making the development of illness even more complex.

We have seen that aspects of physiology, and symptoms, change over time in ME.

Many scientists are convinced that beta-amyloid plaques in the brain are the cause of Alzheimer's disease but, having spent decades developing drugs that remove the plaques from the brain, they have found that this does not treat the illness.

 

[A.B.]

Although I can't cite studies at the moment, my memory is that there are no large differences in cortisol levels between patients and controls. Something like 20% lower cortisol levels.

It's very obvious that low cortisol is not at the root of ME/CFS. We know what disease caused by cortisol deficiency looks like: adrenal insufficiency. I'm sure low cortisol does contribute to symptoms in a portion of patients but the importance has been overstated by people seeking to promote a psychogenic explanation. According to them, cortisol abnormalities indicate stress, and it is implied that this stress is psychological and caused by personality factors. It's wrong to assume that low or high cortisol must be the result of psychological stress, since cortisol levels vary in response to many things and it's common to see altered levels in disease. For example mildly reduced cortisol can just mean low serum protein. I also wonder whether lower cortisol could also be an adaption to difficulties in mounting an appropriate immune response (remember that the Lipkin cytokine study found reduced cytokine levels in long term patients).

 

[FTY]

Still waiting on your list of UK expert ME clinicians and their treatment offerings so that we can direct your compatriots to high quality medical treatment for ME symptoms... this is really important. People are suffering without adequate treatment for comorbid and secondary conditions. Expert clinicians willing and able to treat those conditions are desperately needed. Please share.

Hello SOC, I'm sorry, I do appreciate your desire to help other people with ME, I think we are all on the same side with that. I'm finding this comment a bit strange though and there may be a bit of a misunderstanding. Please read back through the thread because in no place have I claimed anything of the sort. Maybe somebody else did but I'm a bit too tired to try and trace it myself. Of course, if I had a list of clinicians who could offer effective treatments I would share it. It would give me GREAT pleasure.

I'm not going to get into a debate about the causes of ME as the truth is we don't really know. I would like to reassure you however that I DO NOT think that ME is caused 'simply' by stress. I thought I had been clear about that in my comments but I apologise if I wasn't and can understand your anger. I too am infuriated by people who claim that ME is 'simply' a stress response. I do not go along with the theory, made by the Optimum Health Clinic and Gupta etc. that ME is a 'maladaptive stress response' that can be cured by 're-training the brain' (although of course minimising stress can help manage symptoms). My Dr absolutely does not believe in the 'maladaptive stress response' theory. If you listen to the talk and read my comments carefully you will see that this is clearly not the argument being made. I think the cortisol link is a LOT more complicated. That does not mean that it's not worth looking into. My point, which I will emphasise once more, is that we mustn't write off research into this area simply because it refers to stress and cortisol as part of the hypothesis.

I totally agree with you that we should treat symptoms before we know the cause. I agree, provision for this could be better.

If you want to know what's going on in the 21st century in ME research, try reading the work of Mella and Fluge (B-cell abnormalities), Lipkin and Hornig (pathogens), or Brenu and Marshall-Gradisnik (immunology).

For your information, Dr Bansal was one of the first to publish on B-cell abnormalities: http://onlinelibrary.wiley.com/doi/10.1111/cei.12043/abstract. And there is significant research going on right now, including this phd at UCL http://www.ukrituximabtrial.org/Rituximab news-Sep14 02.htm.

None of these areas however look to be offering the definitive answer so we need to stay open minded to new areas of research.

I am going to stop posting now as I think I have made my point however, I appreciate the discussion and I would be interested to know if anyone else has any thoughts on this.

Best Wishes.

 

[FTY]

A combination of long-term abnormalities (perhaps including genetic predispositions) and more-recent issues such as infection, physical trauma, and perhaps chronic stress and persistent over-exertion (resulting in chronically-raised cortisol) can lead to further issues down the line, which in turn can lead to yet further issues. So clearly those issues that have developed over time cannot be fixed by addressing just one of the triggers.

Yes, I agree with you on this. Recognising the causes however may lead to insights into possible treatments - the more information we have the better.

 

[BurnA]

In the video linkj I don't think there is any doubt about what Dr bansal thinks about fear of movement or somatisation. From 7:00 onwards...

"Idiotic. Not sure how it was accepted. Incredible. "

From the Epsom and St Helier university hospital website

Chronic fatigue syndrome
Our Chronic Fatigue Service (CFS), based at Sutton Hospital, with clinics at St Helier Hospital, provides management and support for people with CFS.

The service was opened in early 2005 under the leadership of Dr Amolak Bansal, consultant immunologist at St Helier Hospital, as part of the Department of Health’s chronic fatigue clinical network collaborative to introduce services for individuals with chronic fatigue syndrome where none existed.

General information
As there is currently no cure for chronic fatigue syndrome, treatment is presently based on the management of symptoms to improve function and quality of life.

Management of symptoms will not necessarily take the symptoms away; however, there is evidence which supports a significant reduction in symptoms with improved quality of life through the implementation of lifestyle management strategies. We use a combined bio-psycho-social and cognitive behavioural therapy models in teaching you to manage your symptoms.


Bolding is mine. Surely Dr Bansal should have this removed from the website ?

 

[worldbackwards]

Bolding is mine. Surely Dr Bansal should have this removed from the website ?

Dr. Bansal probably won't do that. His actions towards a PR member detailed in this thread speak for themselves.

 

[halcyon]

Bolding is mine. Surely Dr Bansal should have this removed from the website ?

From what I have read from patients, this actually is his approach.

 

[FTY]

From the Epsom and St Helier university hospital website

Chronic fatigue syndrome
Our Chronic Fatigue Service (CFS), based at Sutton Hospital, with clinics at St Helier Hospital, provides management and support for people with CFS.

The service was opened in early 2005 under the leadership of Dr Amolak Bansal, consultant immunologist at St Helier Hospital, as part of the Department of Health’s chronic fatigue clinical network collaborative to introduce services for individuals with chronic fatigue syndrome where none existed.

General information
As there is currently no cure for chronic fatigue syndrome, treatment is presently based on the management of symptoms to improve function and quality of life.

Management of symptoms will not necessarily take the symptoms away; however, there is evidence which supports a significant reduction in symptoms with improved quality of life through the implementation of lifestyle management strategies. We use a combined bio-psycho-social and cognitive behavioural therapy models in teaching you to manage your symptoms.


Bolding is mine. Surely Dr Bansal should have this removed from the website ?

I'm not sure why we would want Dr Bansal to stop providing us with help to manage symptoms just because his research hasn't yet found a cure. Who can argue that making changes to our life-style doesn't help with symptoms? Maybe people here, me included, are so used to this illness we've forgotten what it can be like for some at the beginning. My illness has been progressive (now moderate/severe) but at the beginning it took years of pushing through and having crashes for me to realise that I had to cut down on work and to learn how to pace myself. It may seem obvious to us now but at the time it didn't fit with my model of how illness worked. With everyone around us believing that exercise is good for health it's incredibly difficult to develop an understanding of ME with no support or guidance. If I'd been given good advice and support on how to pace at the beginning maybe wouldn't have progressed so much. I have a very good understanding of this illness now but will admit that I still struggle to pace and I still benefit from support. I know that it's not going to cure me but whilst no cure exists I have to live with what I've got and I'll take any support I can get. In my experience bio-psyche-social model is quite a sensible one to use given the situation. It doesn't claim that the illness is psychological but accepts that it has a psychological impact - we all know how stressful and depressing this illness is. I wouldn't want to deny this support to people just because we're angry that there's nothing more. Yes, we need more, but let's not throw the baby out with the bath water

 

[MeSci]

I'm not sure why we would want Dr Bansal to stop providing us with help to manage symptoms just because his research hasn't yet found a cure. Who can argue that making changes to our life-style doesn't help with symptoms? Maybe people here, me included, are so used to this illness we've forgotten what it can be like for some at the beginning. My illness has been progressive (now moderate/severe) but at the beginning it took years of pushing through and having crashes for me to realise that I had to cut down on work and to learn how to pace myself. It may seem obvious to us now but at the time it didn't fit with my model of how illness worked. With everyone around us believing that exercise is good for health it's incredibly difficult to develop an understanding of ME with no support or guidance. If I'd been given good advice and support on how to pace at the beginning maybe wouldn't have progressed so much. I have a very good understanding of this illness now but will admit that I still struggle to pace and I still benefit from support. I know that it's not going to cure me but whilst no cure exists I have to live with what I've got and I'll take any support I can get. In my experience bio-psyche-social model is quite a sensible one to use given the situation. It doesn't claim that the illness is psychological but accepts that it has a psychological impact - we all know how stressful and depressing this illness is. I wouldn't want to deny this support to people just because we're angry that there's nothing more. Yes, we need more, but let's not throw the baby out with the bath water

Because it does not look as though this programme does recognise the limitations imposed by this illness, but instead encourages patients to progress, set goals, etc., and if you click on 'Lifestyle management group programme' you will see that it includes graded exercise.

It's all very well them saying that they are going to help patients understand their illness, but it is not going to help, and is likely to harm, if what they (practitioners) understand is wrong, which looks to me to be the case, as with almost every other 'CFS clinic' in the UK.

If Dr Bansal was providing help in line with his research, that would be great, but it appears that he doesn't. Again, this seems to be the pattern in the UK. Even if a clinic is headed by a researcher who understands the illness, the treatment provided is in line with the catastrophically-flawed PACE trial.

 

[FTY]

Because it does not look as though this programme does recognise the limitations imposed by this illness, but instead encourages patients to progress, set goals, etc., and if you click on 'Lifestyle management group programme' you will see that it includes graded exercise.

It's all very well them saying that they are going to help patients understand their illness, but it is not going to help, and is likely to harm, if what they (practitioners) understand is wrong, which looks to me to be the case, as with almost every other 'CFS clinic' in the UK.

If Dr Bansal was providing help in line with his research, that would be great, but it appears that he doesn't. Again, this seems to be the pattern in the UK. Even if a clinic is headed by a researcher who understands the illness, the treatment provided is in line with the catastrophically-flawed PACE trial.

Point very much taken, I agree in many ways. However graded exercise is only one topic of many discussed, it doesn't seem to be pushed at all or privileged over other areas. Surely it's when graded exercise is presented as a cure that it becomes a problem? That doesn't seem to be the case here. The list of approaches here seem very sensible to me: https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome. I think that graded exercise theory has some sense in it - if we cut right down (which may be much less than we currently do) and then feel into what we can manage by gradually increasing and listening to our body until we find a base line where we might still be very disabled but we are not crashing as much, that seems quite reasonable. So I understand that the way it's been presented as a cure is infuriating, but perhaps there is something in it as one of many approaches to help find a level of functioning that is as stable as possible? I think that is possibly all that this program is claiming to offer. But I also understand that the PACE trail is ridiculously flawed and I am not comfortable with the thought of money going towards GE when it could be going towards much better and more useful research. The problem with providing treatments based on the research in my opinion is that the research is just not at that stage yet. There are things to 'try' but doing so can be equally as risky as GE: drugs have bad side effects and can cause crashes too...

 

[worldbackwards]

I think that graded exercise theory has some sense in it - if we cut right down (which may be much less than we currently do) and then feel into what we can manage by gradually increasing and listening to our body until we find a base line where we might still be very disabled but we are not crashing as much, that seems quite reasonable.

That would be quite reasonable if it was how it worked, but it isn't. I've had Graded Exercise. There is no "feeling into what you can do". You are encouraged to push through your symptoms because they are a product of deconditioning and your imagination - as such they are of no relevance. The only symptom of relevance according to GET is fatigue. As such, other symptoms can deteriorate severely and it doesn't really matter, because they're only in your head. And if they don't then, well...that wasn't supposed to happen, so it must be that the patient wasn't motivated to recover. QED.

A gradual increase of activity is no bad thing if you're feeling better. I haven't seen a sensible doctor against it, so long as you are cautious and watch closely for signs of deterioration so you can avoid overdoing it. Along with other treatments I've got a long way like this. But this is not GET. Another key point in GET is the exhortation to increase exponentially (1 minute, then 2, then 3, etc). This kind of target setting is not conducive to patients actually feeling out what they are capable of, if indeed they can move on at all. Being able to move forward is always a given in GET.

A thing to note about Bansal is that there is a patient on this forum who has been pushed by her family into seeing him against her will. She is acutely ill, a stage where as far as I know nobody recommends increasing activity, but Bansal seems intent on making her push at her limits. He has decided for her that her protestations are manifestations of anxiety and is intent on making her override them. As such, whatever Bansal claims to practice, he seems to be clearly working on a fear-avoidance model.

The word "bio-psycho-social" is the clue here - it is not used in conjunction with a patient centred model where our own opinions are taken seriously. Instead, they are treated as suspect and in need of modifying. There is plenty of bathwater sloshing around in Bansal's treatment. I might go so far as to saying some of it is radioactive.

 

[lansbergen]

but perhaps there is something in it as one of many approaches to help find a level of functioning that is as stable as possible?

There is no stable level of functioning.

 

[MeSci]

I'm not convinced that another person is going to be better able than, or even as able as, an ME/CFS sufferer to figure out their limits. Or at least I am not convinced that such knowledgeable/skilled people are likely to be found in a UK CFS clinic that also offers graded exercise and has a clear focus on goals and progress.

Sometimes we can make progress, but IMO it is not a good idea to be setting goals. We may not be able to achieve them, and will then be disappointed and disheartened, and/or feel inadequate or hopeless.

Our bodies are in charge, and we need to respect them, and become highly attuned to what they are telling us. Then they may reward us with improved function. But we must NOT push things.

 

[BurnA]

I'm not sure why we would want Dr Bansal to stop providing us with help to manage symptoms just because his research hasn't yet found a cure. Who can argue that making changes to our life-style doesn't help with symptoms? Maybe people here, me included, are so used to this illness we've forgotten what it can be like for some at the beginning. My illness has been progressive (now moderate/severe) but at the beginning it took years of pushing through and having crashes for me to realise that I had to cut down on work and to learn how to pace myself. It may seem obvious to us now but at the time it didn't fit with my model of how illness worked. With everyone around us believing that exercise is good for health it's incredibly difficult to develop an understanding of ME with no support or guidance. If I'd been given good advice and support on how to pace at the beginning maybe wouldn't have progressed so much. I have a very good understanding of this illness now but will admit that I still struggle to pace and I still benefit from support. I know that it's not going to cure me but whilst no cure exists I have to live with what I've got and I'll take any support I can get. In my experience bio-psyche-social model is quite a sensible one to use given the situation. It doesn't claim that the illness is psychological but accepts that it has a psychological impact - we all know how stressful and depressing this illness is. I wouldn't want to deny this support to people just because we're angry that there's nothing more. Yes, we need more, but let's not throw the baby out with the bath water

I agree with a lot of what you say. However I am not rying to deny support to anyone and never even hinted this should be the case. My issue is that a specialist ME/CFS clinic with an immunologist at the helm should not be promoting CBT. Immunology and CBT have nothing in common therefore why would he promote it ?

My issue is with this : We use a combined bio-psycho-social and cognitive behavioural therapy models in teaching you to manage your symptoms.

This implies the symptoms of ME/CFS can be alleviated by CBT. There is no evidence of this. If there are patients out there who benefit from CBT because of secondary symptoms of having ME/CFS such as depression then by all means I have no problem with that. There are many patients out there who dont have depression or any symtoms which can be cured or managed by CBT. Therefore by linking CBT to managing the symptoms of ME/CFS they are doing a disservice to these patients.
There is no baby or bathwater involved, we shouldnt be linking CBT with ME/CFS, they are two unrelated things, thats my point.

 

[FTY]

I'm not convinced that another person is going to be better able than, or even as able as, an ME/CFS sufferer to figure out their limits. Or at least I am not convinced that such knowledgeable/skilled people are likely to be found in a UK CFS clinic that also offers graded exercise and has a clear focus on goals and progress.

Sometimes we can make progress, but IMO it is not a good idea to be setting goals. We may not be able to achieve them, and will then be disappointed and disheartened, and/or feel inadequate or hopeless.

Our bodies are in charge, and we need to respect them, and become highly attuned to what they are telling us. Then they may reward us with improved function. But we must NOT push things.

Yes, completely agree.

 

[Valentijn]

In my experience bio-psyche-social model is quite a sensible one to use given the situation. It doesn't claim that the illness is psychological but accepts that it has a psychological impact - we all know how stressful and depressing this illness is.

Yes, they are good at sounding sensible. Yet when it comes to treatment, little or nothing in done regarding medical treatment, and behavioral and cognitive treatments are pushed onto patients. The "bio" doesn't really get treated (antidepressants "for pain" at most), the "social" aspect seems to consist of restricting social support for patients, and the focus is entirely on treating psychological components.

The BPS model for ME/CFS claims that there is a biological illness as a trigger (because they can't deny the research proving it), but that we recover from the illness. BPS practitioners believe that our ongoing symptoms are psychogenic, and that we have somehow forgotten how to recover from illnesses, despite doing it dozens of times in our lives previously, and now persist in wrongly believing we are ill after the infection has passed.

These quacks like the BPS model precisely because it is capable of sounding reasonable, and because it is also capable of reframing the illness in a manner which allows them to treat it as if it is psychogenic. There may be some truly good-intentioned idiot doctors who believe that a holistic bio-psycho-social approach is appropriate for ME/CFS, but only if they have completely ignored the instructions and implications for treatment based on that approach.

In any event, such a doctor is going to be of no help, and could do a great deal of harm.

 

[A.B.]

The word "biopsychosocial" was the response to psychiatry being accused of ignoring the biological basis of disease. It seems that the purpose of the word BPS is just to give the impression of not ignoring biological aspects while in practice continuing to do so (at least in this context).

 

[jimells]

In my experience bio-psyche-social model is quite a sensible one to use given the situation. It doesn't claim that the illness is psychological but accepts that it has a psychological impact - we all know how stressful and depressing this illness is

I wonder if it may be more accurate and useful to say that the illness has a social impact as opposed to psychological impact. I have been harmed at least as much by society's response to my illness as by the illness itself. For example, it isn't an illness process or thinking the wrong thoughts that continually tries to kick me off the few social benefits I receive. (I'm being kicked off food stamps now - because I'm saving too much money for home repairs)

Some patients are able to withstand the social impacts without incurring psychological damage, and some are not. Psychs should be trying to prevent that kind of damage, not covering it up with babble. It doesn't take "CBT" to explain to patients that they are really ill and need to stay within their energy envelope - just a competent, caring physician.

 

[jimells]

Exactly Gingergirl, Dr Bansal is a fraud and a sham. Diagnosed me with severe Me and then had the gall to be like anxiety makes everything worse, here have some Lyrica. And now my healthcare is entirely in the hands of a clueless mental health referral unit who were given my case literally 2 weeks into my illness by a useless GP who just thought I was depressed. I am so confused by why/how this has happened. But fight for me. Seriously, fight. I need this. I need allies, advocates. Because what happens tomorrow is anyone's guess, but I may well end up another Karina. Because I am becoming increasingly disabled. I gave my name and mothers no, if nobody hears from me in two days make some calls. Contact her, please. It's all I can tell you. I am not being listened to.