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

[jimells]

This is interesting about Dr Bansal. Just last night I was reading about him in this statement by Professor Edwards regarding the Invest In ME Rituximab trial:

A recent study by Dr Amolak Bansal and colleagues also suggests that B cells may be functioning abnormally in a significant proportion of people with ME/CFS. ...

The UCL service set up when we started treating rheumatoid arthritis, lupus and a range of other conditions has the most extensive experience. ...

UCL also has a new Clinical Trials Research Facility with staff appointed to manage trials of this sort.

Importantly, there is enthusiasm amongst local teams for a rituximab ME/CFS trial.

I have suggested to IiME that this would be the ideal centre for such a trial, to be set up in collaboration with clinicians with expertise in ME/CFS from around London, and in particular Dr Bansal.

IiME have accepted this and this is the planned and preferred research base for this trial.

I have very high confidence in Professor Edwards' opinions (I know, appeal to authority) so this thread is creating a bad case of cognitive dissonance for me.

(it sure is hard to tell the players without a score card)

 

[MeSci]

This is interesting about Dr Bansal. Just last night I was reading about him in this statement by Professor Edwards regarding the Invest In ME Rituximab trial:

I have very high confidence in Professor Edwards' opinions (I know, appeal to authority) so this thread is creating a bad case of cognitive dissonance for me.

(it sure is hard to tell the players without a score card)

Cognitive dissonance - good term!

If the 'nitrous oxide' error was just a slip, and the apparent leanings towards psychoquackery were just examples of not wanting to rock the UK boat, Prof Edwards may be right about Bansal. OTOH, although I share your confidence in the Prof, I still sometimes disagree with him!

I like the idea of an ME research base at UCL.

 

[SOC]

I have suggested to IiME that this would be the ideal centre for such a trial, to be set up in collaboration withclinicians with expertise in ME/CFS from around London, and in particular Dr Bansal.

Given the climate in the UK with regards to ME, finding completely untainted physicians and researchers there is a near impossibility. If you want to put together a group of UK doctors with "expertise in ME/CFS from around London" (), you are likely to end up with staff with some pretty odd ideas. Odd to the rest of the world, at least. Bansal is probably up there among the best of a bad choice. But what are you going to do? You have to start somewhere. It's not like Peterson or Montoya or other top ME clinician is going to want to work in the UK in the current situation

 

[Scarecrow]

Given the climate in the UK with regards to ME, finding completely untainted physicians and researchers in there is a near impossibility. If you want to put together a group of UK doctors with "expertise in ME/CFS from around London" (), you are likely to end up with staff with some pretty odd ideas. Odd to the rest of the world, at least. Bansal is probably up there among the best of a bad choice. But what are you going to do? You have to start somewhere. It's not like Peterson or Montoya or other top ME clinician is going to want to work in the UK in the current situation

That it isn't entirely fair to the biomedical researchers in the UK who have devoted themselves to ME. They may not be as well known as Peterson and Montoya but they do important work. I think you were closer yesterday when you made this comment:

Where is Dr Amolak Bansal practicing?

Nevermind, found it. UK. That probably explains some of those bizarre remarks. Even someone with an interest in some of the biomedical features of ME can be susceptible to pervasive brainwashing and/or implied threats to their career if they don't at least give an appearance of toeing the line.

If they are deemed tainted because they have been intimated, then they have my sympathy. That's a fault of a system which is not providing them with adequate protection from those who, ironically, constantly claim harassment. It certainly isn't the fault of the biomedical researchers.

You'll find examples of researchers from around the world - but including those in the UK - criticising the undue influence psychologists and psychiatrists have had in this NICE guidelines review document from 2010:
https://www.nice.org.uk/guidance/cg...omyelitis-review-consultation-comments-table2

including

Dr Jonathan Kerr Hon. Consultant in Microbiology Consultant Senior Lecturer in Inflammation Principal Investigator of the CFS Group St George’s University of London 11th August 2008

"The predominance of psychologists / psychiatrists on the Guideline Development Group is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials which support the use of psychological treatments; however, these studies did not properly or adequately define their patient population"

and

Dr Neil Abbot Hon Research Fellow, Department of Medicine University of Dundee 29th August 2008

"There have been only five trials of CBT with a validity score greater than 10, one of which was negative for the intervention; and only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a „control‟ intervention adequate to determine specific efficacy, and their results are relatively modest. In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with myalgic encephalomyelitis. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution as regards the usefulness of (CBT/GET). A commentary in the BMJ (Bolsover 2002) is particularly relevant: „Until the limitations of the evidence base for CBT are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed‟. Indeed, a large body of both professional and lay opinion considers that these essentially adjunctive techniques have little more to offer than good medical care alone"

Don't forget that Montoya himself said at the 2015 CMRC conference in Newcastle, UK:

….“I have a wish and a dream that medical and scientific research societies in the US apologise to their ME/CFS patients”.

 

[SOC]

That it isn't entirely fair to the biomedical researchers in the UK who have devoted themselves to ME. They may not be as well known as Peterson and Montoya but they do important work. I think you were closer yesterday when you made this comment:

If they are deemed tainted because they have been intimated, then they have my sympathy. That's a fault of a system, which is not providing them with adequate protection from those who, ironically, constantly claim harassment. It certainly isn't the fault of the biomedical researchers.

You'll find examples of researchers from around the world - but including those in the UK - criticising the undue influence psychologists and psychiatrists have had in this NICE guidelines review document from 2010:
https://www.nice.org.uk/guidance/cg...omyelitis-review-consultation-comments-table2

Dr Kerr is hardly a good example, since he was effectively driven out of practice for his views on ME and no longer even lives in the UK.

I agree things aren't perfect anywhere and ME patients are due apologies from medical and scientific research societies worldwide. The CDC did a LOT of damage to ME/CFS patients worldwide that will take decades to overcome. Nobody is saying that there were never any problems elsewhere. The discussion is about what is currently happening and the establishment of treatment facilities in the near future -- and the suggestion that Dr Bansal with his psych-based ideas of intrusive thoughts and "not just a psych problem" is an expert ME clinician.

I think the point you may have missed is that the quote referred specifically to clinicians, not researchers. Clinicians in the UK are not currently knowledgeable about treatments that are significanty improving QOL in ME patients and/or they are not allowed to use those treatments. So we hear a lot of crap from them about "not just a psychological problem", bizarre ideas about intrusive thoughts causing symptoms, and recommendations for psychotherapeutic treatment for ME. That simply does not qualify as expertise in ME treatment. Unless UK patients here at PR are keeping secrets from the rest of us, the idea of multiple "expert" ME clincians currently practicing in London is laughable. Who are they? Where are their patients? What treatments are the patients getting from these expert clinicians? Why aren't the patients here at PR raving about their treatment and recommending these expert clinicians to other patients?

Bottom line, though -- it's your country, not mine. If you're satisfied with what you're getting and feel that it's clinical expertise, who am I to complain? I confess that I get grumpy when I hear so much BS about stress, intrusive thoughts, and psych issues associated with ME called expertise, but I'm not the one who has to live with it. I get decent treatment that took me from bedbound and unable to read to a relatively normal life -- taking care of all my ADLs, working part-time, and minimal symptoms if I don't overdo. I'm pleased that treatment is available to me and my daughter. If UK patients are pleased with what's available to them, why should I complain about it?

My bad.

 

[MEMum]

Bottom line, though -- it's your country, not mine. If you're satisfied with what you're getting and feel that it's clinical expertise, who am I to complain? I confess that I get grumpy when I hear so much BS about stress, intrusive thoughts, and psych issues associated with ME called expertise, but I'm not the one who has to live with it. I get decent treatment that took me from bedbound and unable to read to a relatively normal life -- taking care of all my ADLs, working part-time, and minimal symptoms if I don't overdo. I'm pleased that treatment is available to me and my daughter. If UK patients are pleased with what's available to them, why should I complain about it?

My bad.[/QUOTE]

I am sure that no-one in the UK is satisfied with their 'treatment' or lack of it. They are also devastated by the trivialisation of their condition, with headlines of "positive thinking and exercise cures CFS" or equivalent drivel. Most would love to have access to more treatments and some can afford to travel to get them.
I am pleased that you have been able to obtain decent treatment and now lead a relatively normal life.
People with ME in this country have been striving for years to get the CBT/GET approach thrown out and biomedical research funded.

 

[Scarecrow]

Dr Kerr is hardly a good example, since he was effectively driven out of practice for his views on ME and no longer even lives in the UK.

He was living in the UK in 2008 when he made the statement. And I don't think we'll ever know the truth of what happened to his lab and his inability to secure funding but surely the fact that he was driven out because of his views, if that is in fact what happened, perfectly illustrates the point that researchers may feel that their careers are threatened.

I think the point you may have missed is that the quote referred specifically to clinicians, not researchers

It was you who introduced the word researchers and I was responding to your point.

Look, I'm not defending the quality of ME/CFS clinicians in the UK. In my personal experience, I can report nothing good about them, though I'm based near a PACE centre. So, you know, not really fertile grounds for actual, real medicine. My own leanings are towards the more adventurous approach of US clinicians and yes, I wish I had access to trying treatments that aren't available to me here.

With regards to the IiME rutiximab trial, based at UCL, where else do you suggest they obtain patients from if not from clinics in the London area?

 

[Scarecrow]

Thanks for this @Theodore , I can't see a date on that link. Do you know when the talk was given?

Your welcome. There was a Saturday 26th in the calendar of this year so it's 2015 I guess.

I'd say 2009. Look at the topics that are considered to be recent developments. I'm sure Bansal isn't that hopeless.

It's from the 'old news' section of the website.

 

[SOC]

I am sure that no-one in the UK is satisfied with their 'treatment' or lack of it. They are also devastated by the trivialisation of their condition, with headlines of "positive thinking and exercise cures CFS" or equivalent drivel. Most would love to have access to more treatments and some can afford to travel to get them.
I am pleased that you have been able to obtain decent treatment and now lead a relatively normal life.
People with ME in this country have been striving for years to get the CBT/GET approach thrown out and biomedical research funded.

I know. That was why I was complaining on your behalf. It appears that I was mistaken, though. It seems there are multiple expert ME clinicians in the London area alone (according to JE). Maybe if you contact him, he can put you in touch with them -- or give you names, at least. If he's right about their expertise, you should be able to get more satisfactory treatment than CBT/GET drivel.

It seems a number of UK patients would rather I didn't complain. They feel that the ME clinical expertise in the UK is above reproach. That's fair enough. When it gets down to it, the quality of ME clinical expertise in the UK is ultimately an issue for UK patients to deal with, so if they would rather those of us on the outside don't criticize it, they're entitled. If Bansal is good enough for y'all, who am I to complain? There's plenty of stuff going on in the US for me to talk about. I can leave the UK stuff alone. I don't have to be offended on your behalf at what I consider to be the appalling lack of even the most basic biomedical treatment accompanied by nonsense about intrusive thoughts causing ME symptoms or whatever other claptrap your "expert" clinicians hand out.

 

[SOC]

It was you who introduced the word researchers and I was responding to your point.

My apologies. You're right, I did, although I have to confess that my mind was on clinicians which is why I mentioned Peterson and Montoya specifically and not Lipkin, Hornig, the Lights, Davis, Van Nessand so on. I'm not up-to-date on the high-quality biomedical research coming out of the UK at the moment, so I'm in no position to discuss the quality of that research.

And I don't think we'll ever know the truth of what happened to his lab and his inability to secure funding but surely the fact that he was driven out because of his views,...

Fair enough. If it's just a rumor, that it isn't evidence.

...if that is in fact what happened, perfectly illustrates the point that researchers may feel that their careers are threatened.

Which doesn't speak well for the quality of ME research that can be done in the UK, does it?

With regards to the IiME rutiximab trial, based at UCL, where else do you suggest they obtain patients from if not from clinics in the London area?

As far as I recall, I didn't say anything about where they obtain patients from. As long as these experts can actually distinguish ME from generalized fatigue or depression/anxiety, there shouldn't be a problem using patients from those clinics. I questioned whether there is anything resembling clinical expertise in London, and in particular that there are multiple expert ME clinicians in the area. But as I said, if you're happy with calling what's there expertise, there's no reason for me to keep objecting to the "expert" care you're getting.

 

[Jenny]

Dr Kerr is hardly a good example, since he was effectively driven out of practice for his views on ME and no longer even lives in the UK.

I agree things aren't perfect anywhere and ME patients are due apologies from medical and scientific research societies worldwide. The CDC did a LOT of damage to ME/CFS patients worldwide that will take decades to overcome. Nobody is saying that there were never any problems elsewhere. The discussion is about what is currently happening and the establishment of treatment facilities in the near future -- and the suggestion that Dr Bansal with his psych-based ideas of intrusive thoughts and "not just a psych problem" is an expert ME clinician.

I think the point you may have missed is that the quote referred specifically to clinicians, not researchers. Clinicians in the UK are not currently knowledgeable about treatments that are significanty improving QOL in ME patients and/or they are not allowed to use those treatments. So we hear a lot of crap from them about "not just a psychological problem", bizarre ideas about intrusive thoughts causing symptoms, and recommendations for psychotherapeutic treatment for ME. That simply does not qualify as expertise in ME treatment. Unless UK patients here at PR are keeping secrets from the rest of us, the idea of multiple "expert" ME clincians currently practicing in London is laughable. Who are they? Where are their patients? What treatments are the patients getting from these expert clinicians? Why aren't the patients here at PR raving about their treatment and recommending these expert clinicians to other patients?

Bottom line, though -- it's your country, not mine. If you're satisfied with what you're getting and feel that it's clinical expertise, who am I to complain? I confess that I get grumpy when I hear so much BS about stress, intrusive thoughts, and psych issues associated with ME called expertise, but I'm not the one who has to live with it. I get decent treatment that took me from bedbound and unable to read to a relatively normal life -- taking care of all my ADLs, working part-time, and minimal symptoms if I don't overdo. I'm pleased that treatment is available to me and my daughter. If UK patients are pleased with what's available to them, why should I complain about it?

My bad.

I have had good experiences of ME doctors in London, despite them being unable to help me given current knowledge of ME. All the NHS doctors I've seen over the last 30 years for ME (probably about 20 doctors) have been supportive, and have recognised ME as a physical illness. Many gave me every test I asked for in order to exclude all sorts of conditions, and some gave me tests that were only available for research purposes as they were so puzzled by my symptoms. One of these tests showed several immune abnormalities including some of those mentioned by Dr Bansal. Only one offered CBT and GET, and at the same time said she doubted these treatments would help.

One NHS specialist saw me for 2 1/2 hours in his office every two months for two years, to discuss my symptoms, recent research, and possible further testing and experimental treatments. Another gave me long term anti-viral treatments on an experimental basis, which must have been very expensive. I have also been prescribed long-term B12 injections and numerous other medications which have been recommended as worth a try.

I know others in the UK have been very badly treated, and I feel lucky to have been unscathed by the NHS. But it's important to recognise that many doctors are doing their best in a very difficult situation.

 

[Scarecrow]

Which doesn't speak well for the quality of ME research that can be done in the UK, does it?

I'm not sure about 'can'. There's every reason why it can be done but I think what is suggests is that if you are trying to access funding from the establishment, as I believe Kerr was***, then discretion may be the better part of valour. If your funding comes from charitable sources, then there's probably more freedom in what you can say.

*** edited to add that he wasn't but he was applying for MRC funds. Previous funds came from the CFS Research Foundation.

But as I said, if you're happy with calling what's there expertise, there's no reason for me to keep objecting to the "expert" care you're getting.

I think we're both agreed that there's very little in the way of expert care which is not quite the same as no experts.

 

[BurnA]

Where is Dr Amolak Bansal practicing?

Nevermind, found it. UK. That probably explains some of those bizarre remarks. Even someone with an interest in some of the biomedical features of ME can be susceptible to pervasive brainwashing and/or implied threats to their career if they don't at least give an appearance of toeing the line.

So glad to hear he believes ME is not just a psychological problem.


Intrusive memories causing fatigue? Interesting idea. What exactly is the physical correlation there? I'd like to know what evidence he has to back up this idea, or if he just pulling this out of.... er.. the back of his mind. And of course everyone knows ME is all about the kind of fatigue you get from mere memories of stress. [sarcasm]

At least he appears to be educable.

In the video link 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. "

 

[clive powney]

Dr Kerr is hardly a good example, since he was effectively driven out of practice for his views on ME and no longer even lives in the UK.

I agree things aren't perfect anywhere and ME patients are due apologies from medical and scientific research societies worldwide. The CDC did a LOT of damage to ME/CFS patients worldwide that will take decades to overcome. Nobody is saying that there were never any problems elsewhere. The discussion is about what is currently happening and the establishment of treatment facilities in the near future -- and the suggestion that Dr Bansal with his psych-based ideas of intrusive thoughts and "not just a psych problem" is an expert ME clinician.

I think the point you may have missed is that the quote referred specifically to clinicians, not researchers. Clinicians in the UK are not currently knowledgeable about treatments that are significanty improving QOL in ME patients and/or they are not allowed to use those treatments. So we hear a lot of crap from them about "not just a psychological problem", bizarre ideas about intrusive thoughts causing symptoms, and recommendations for psychotherapeutic treatment for ME. That simply does not qualify as expertise in ME treatment. Unless UK patients here at PR are keeping secrets from the rest of us, the idea of multiple "expert" ME clincians currently practicing in London is laughable. Who are they? Where are their patients? What treatments are the patients getting from these expert clinicians? Why aren't the patients here at PR raving about their treatment and recommending these expert clinicians to other patients?

Bottom line, though -- it's your country, not mine. If you're satisfied with what you're getting and feel that it's clinical expertise, who am I to complain? I confess that I get grumpy when I hear so much BS about stress, intrusive thoughts, and psych issues associated with ME called expertise, but I'm not the one who has to live with it. I get decent treatment that took me from bedbound and unable to read to a relatively normal life -- taking care of all my ADLs, working part-time, and minimal symptoms if I don't overdo. I'm pleased that treatment is available to me and my daughter. If UK patients are pleased with what's available to them, why should I complain about it?

My bad.

@SOC

It is great to hear that you (and maybe your daughter) have recovered enough to lead a normalish life. Have you got a "story" of how you managed this (sorry if you have done this before). Also is there any single resource that you can point me in as to the current thinking of the experts in the US. You seem to know quite a lot of information on cutting edge researchers.
I have followed this site for many years and there still seems to be as many individuals struggling to get to some sort of normality over there as there are here. I have followed NUMEROUS protocols and advice from this site and many others but still haven't really managed to get to a point whereby I could maybe work again. My best shot so far is using HC and T3 with various vitamins and Kefir, trying to treat reverse T3 and low adrenal reserve but still have only marginal improvement.
Thanks in advance
Clive

 

[SOC]

@SOC

It is great to hear that you (and maybe your daughter) have recovered enough to lead a normalish life. Have you got a "story" of how you managed this (sorry if you have done this before). Also is there any single resource that you can point me in as to the current thinking of the experts in the US. You seem to know quite a lot of information on cutting edge researchers.
I have followed this site for many years and there still seems to be as many individuals struggling to get to some sort of normality over there as there are here. I have followed NUMEROUS protocols and advice from this site and many others but still haven't really managed to get to a point whereby I could maybe work again. My best shot so far is using HC and T3 with various vitamins and Kefir, trying to treat reverse T3 and low adrenal reserve but still have only marginal improvement.
Thanks in advance
Clive

There are very few top ME specialists in the world and even though a large proportion of them are in the US, the US is a large country, so few of us can find a way to get under the care of an ME specialist. Consequently, there's still many people in the US (and elsewhere) who aren't getting the best available treatment.

My uncle appears to be fully recovered and is currently taking no more treatmtents. My daughter is in or near remission. I am much improved, but still quite limited. All of us are in the viral subset, which likely matters when considering whether what worked for us might work for you. My daughter and I still take a lot of symptomatic treatments to maintain our current condition.

I'll be happy to share the treatments we've tried that worked for us, but I don't want to take this thread further OT. If you want, you can PM me and I'll give you as much info as I can remember.

 

[FTY]

Bansal: "...this is not just a psychological problem."

Just like that.

Where is Dr Amolak Bansal practicing?

Nevermind, found it. UK. That probably explains some of those bizarre remarks. Even someone with an interest in some of the biomedical features of ME can be susceptible to pervasive brainwashing and/or implied threats to their career if they don't at least give an appearance of toeing the line.

So glad to hear he believes ME is not just a psychological problem.


Intrusive memories causing fatigue? Interesting idea. What exactly is the physical correlation there? I'd like to know what evidence he has to back up this idea, or if he just pulling this out of.... er.. the back of his mind. And of course everyone knows ME is all about the kind of fatigue you get from mere memories of stress. [sarcasm]

At least he appears to be educable.

I would just like to re-iterate what Dr Bansal says in the video as some people seem to have mis-understood. There are 4 kinds of stress: physical, mental, emotional and infective stress (18.36mins). Neuroendocrine and immunological changes occur in the body as a response to stress. The body does not differentiate between different types of stress. The stress response is a stress response regardless of the intricacies of the initial stress.

ME usually starts with some kind of stress and usually a combination. The example Dr Bansal gives is having a virus at the time of exams when the immune system is already compromised. But it could be a combination of the stress of a virus, immunisations, environmental toxins, too much physical exertion, prolonged work or exam stress or a trauma such as abuse or a car accident. These are all stressors and they all provoke a stress response in the body (even the 'stress' we would normally consider purely 'psychological'). By acknowledging that the root of stress can be emotional, Dr Bansal is not saying that ME is 'all in the mind'. Even if your ME has occurred at a time of emotional stress or trauma, it then becomes very much physical.

Although I understand the frustration, I think we must be careful not to dismiss, on reflex, anything that includes the word 'stress', 'emotion' or 'psychological' because we could miss out on some very interesting research if we do so.

However, I can see that not everyone has this nuanced view of mind/body and it is very important that we make it clear to the public and to doctors that ME is as much a physical disease as any other.

Also, as patients, we can't decide in advance what we want the research to show (i.e. 'a virus' or 'faulty B cells' etc.) Ideally, we want it to be one thing that we can fix. In my opinion, and as Dr Bansal is saying I think, is that it will be a combination of these things and although this is not the truth that we want, if it is the truth we are wrong to rally against it because it will hold us back on the path of finding an actual effective treatment. I think that the theory of end organ unresponsiveness to cortisol is interesting... it may lead somewhere. Even if it doesn't, it still tells us something, that's how science works. We can't control the results.

I don't want to provoke controversy, but in terms of treatment in UK vs US, there are some people in US who have recovered from treatments such as anti-virals, but there is not a greater understanding of ME amongst US specialists than there is amongst UK researchers. They read each others work, they share any proper research that is done. The problem is, there isn't much proper research. I have to say, (in my opinion,) it seems that many Drs in US are willing to try out new things on patients before the data is established, in the UK we have a different system and so this is not possible. Of course we want to try new things, as we are desperate, however I don't think we'll get a really clear understanding of exactly what is going on through this approach only. Sometimes it works, sometimes it doesn't. It seems more often than not it doesn't. Treatment results are not consistent (or we wouldn't all be here) or properly understood and can be negative so for me the research is more important right now. Let's support the people who are doing it.

 

[FTY]

Above message refers to this video

 

[SOC]

The body does not differentiate between different types of stress.

Of course the body distinguishes between an infection and an emotional stress. It's a gross oversimplification to say the body doesn't distinguish between stressors. Yes, there are some similar responses. That's far from there being no distinction. One might want to blur the distinctions if one believes ME is no more than a stress response, but if one understands even the beginnings of the complexity of ME, one knows it's more than just an aberrant stress response.

I don't want to provoke controversy, but in terms of treatment in UK vs US, there are some people in US who have recovered from treatments such as anti-virals, but there is not a greater understanding of ME amongst US specialists than there is amongst UK researchers.

Compare the quality and amount biomedical research coming out of the UK to that coming out of the US, Australia, and Norway and tell me with a straight face that there is not a greater understanding of ME among researchers in other countries. Or are you saying that the understanding exists but is not translated into either clinical care or quality research? Or are you saying research identifying ME as a psychosomatic condition or an aberrant stress response is equivalent to the work of Lipkin & Hornig, Olag & Fluge, or the Griffith U researchers?

And anyway we were talking about clinicians. A clinician cannot be an expert at treating a particular illness if he doesn't actually have any experience with using the treatments. That's common sense. Researchers reading research papers does not translate to clinical expertise among clinicians.

If there are all these UK expert ME clinicians providing high-quality biomedical treatment, why aren't all our UK members here raving about them and sharing their names with their fellow patients? I keep hearing these claims of expert biomedical clinicians but none of those claimants have been willing to share the names and treatment protocols so that their countrymen and -women can benefit from the treatment. Why not?

It's time to put up. Your fellow patients are in desperate need of the quality care you claim exists in volume -- many expert clinicians in a single city, in fact. That should be enough to make a big difference for many patients here at PR alone. People really want to know who these doctors are and what they are doing for patients. There is a section here are PR for patients to discuss various ME/CFS clinicians and their treatment protocols. For some mysterious reason, there don't seem to be any extensive positive threads about any of these many UK expert ME clinicians. Maybe you could start a thread for each of the many experts you know exist to encourage further discussion of their expertise and to help your fellow patients find expert care. If you don't want to go to the trouble of starting all those new threads, please, just list the names (and perhaps locations if you can be bothered) of these clinical experts and I'll create the threads. Our UK compatriots need this information!

I'm a big supporter of research. My donations all go to research. I think that's the only way we are going to find treatment for ME directly. At the same time, I don't dismiss established treatment for known conditions -- infections, immune dysfuntion, dysautonomia, sleep disorders -- simply because those treatments are not established treatments for ME specifically. The argument that those treatments should not be given to ME patients because there's not enough research to show they treat ME is utter nonsense. That's like saying we shouldn't treat a cancer patient for a bladder infection because there's no research to show antibiotics cure cancer. Or that we shouldn't treat an HIV patient for a documented CMV infection because antivirals don't treat HIV.

There's a lot of handwaving going on in some circles to justify refusal to test and treat ME patients for known comorbid and secondary conditions simply because those treatments are not known to directly treat ME. It's just that -- handwaving nonsense with no logical basis.

But if you're happy sitting around without treatment for treatable symptoms, I'm not interested any in trying to convince you that it's worth trying to improve your QOL while we're waiting the 10-20 years for the research to play out. It's your life. You can wait for the One Magic Pill that cures all ME symptoms. I prefer to feel better and do more during the time I'm waiting for a treatment specific to ME. To each his own.

 

[FTY]

if one understands even the beginnings of the complexity of ME, one knows it's more than just an aberrant stress response

It is more than just a normal stress response. That is precisely the point. But it could be an aberrant stress response. An aberrant stress response could reasonably be the cause of severe immune system dis-function and other complex problems. We just don't know.

Saying that something is caused by an 'aberrant stress response' DOES NOT mean that it is simply 'in the mind' neither does it mean that it can be fixed by emotional/cognitive therapies.

Of course the body distinguishes between an infection and an emotional stress. It's a gross oversimplification to say the body doesn't distinguish between stressors. Yes, there are some similar responses. That's far from there being no distinction.

Yes, it is an over simplification. Very difficult not to simplify and still be able to say anything at all in less than an essay length piece. Of course the body responds differently in many ways!! In some ways it doesn't, I think that my point was clear given the context. I was making the point that somebody simply acknowledging that emotional stress causes an increase in cortisol and other stress responses in the body does not mean that they believe that ME is 'all in the mind'.

 

[SOC]

if one understands even the beginnings of the complexity of ME, one knows it's more than just an aberrant stress response.

It is more than just a normal stress response. That is precisely the point. But it could be an aberrant stress response.

So are you saying ME is just an aberrant stress response, or not?

An aberrant stress response could reasonably be the cause of severe immune system dis-function and other complex problems.

Give me scientific evidence that aberrant stress response can cause the type of immune dysfunction and other symptoms seen in ME. Not somebody's theory -- sound scientific studies. Studies about people getting more colds when they've been under stress is not evidence of severe immune dysfunction or the major symptoms seen in ME. I expect to see research that actually matches our situation before I accept abberant stress response as a cause of ME.

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. That's why expert clinicans left that theory behind ages ago. 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). There's more, but that's a good start. We can look at the multiple Stanford and Columbia research projects and see if anyone is looking into cortisol response as a major factor in ME, but I don't think they are. Unsurprisingly, those researchers think ME is much more complex than that.

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.