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

[FTY]

Has anyone been a patient of Dr Bansal and had any tests or treatment?

I am. He's very nice and I appreciate the way that he speaks to me like an intelligent person and understands the illness very well but unfortunately doesn't have anything to offer in the way of treatment at the moment, mostly just the usual management stuff - pacing etc. He did recommend that my GP try me on low dose thyroxine and prednisolone a few years ago, maybe worked very slightly for a bit then didn't so came off. He recommends B12 injections which my GP did give me but they didn't seem to do anything for me so I no longer have them. I haven't had any 'treatments' from him since then. What he does give me is the knowledge that there are some Drs out there who understand and are doing the right research, there is some progress being made, however slowly.

 

[adreno]

The issue here is we have cells with lots of the inactive binding receptor, which inhibits a cortisol response. It is, I think, the beta cortisol receptor. So we might make cortisol but it does not work, a lot like people with thyroid resistance might have seemingly normal thyroid ranges, and people with insulin resistance can have seemingly normal insulin

Okay, but the usual reaction to glucocorticoid resistance is hypercortisolism, whereas PWMEs often test low on serum cortisol.

 

[BurnA]

Here's the video where Dr Bansal lecture where he talks about his research, it's an interesting talk, worth watching:

I find it interesting the link to stress, ( emotional, physical, mental etc) at a time of viral infection.
I wonder how this could be a factor if he is suggesting patients with ME have GC issues.
Unless I am mistaken he also links viral infection to autoimmunity which is something @Jonathan Edwards would not be in agreement with I suggest.

How do they know what signs are the result of ME versus what might have been present in patients prior to ME ? Or do they ?

Would like to know the outcome of this work.

 

[alex3619]

Okay, but the usual reaction to glucocorticoid resistance is hypercortisolism, whereas PWMEs often test low on serum cortisol.

It goes to mechanisms. If this finding is replicated in a large group then we have an issue that requires explaining.

For example, what if the primary problem is some molecular signal telling tissues, and ultimately the brain, that we have too much cortisol? Both the brain and the tissues affected might act to neutralize or down-regulate cortisol. This is speculative of course.

The other issue with us is not so much cortisol deficiency as inverted circadian timing of cortisol ... low when it should be high, high when it should be low. Nobody has yet figured out the mechanism behind this.

 

[BurnA]

It goes to mechanisms. If this finding is replicated in a large group then we have an issue that requires explaining.

For example, what if the primary problem is some molecular signal telling tissues, and ultimately the brain, that we have too much cortisol? Both the brain and the tissues affected might act to neutralize or down-regulate cortisol. This is speculative of course.

The other issue with us is not so much cortisol deficiency as inverted circadian timing of cortisol ... low when it should be high, high when it should be low. Nobody has yet figured out the mechanism behind this.

Do you think the coritisol 'issues' in pwme are a direct result of ME or were they there in some form prior to onset ?

 

[Gijs]

Okay, but the usual reaction to glucocorticoid resistance is hypercortisolism, whereas PWMEs often test low on serum cortisol.

Yes, but i know patiënts who have high cortisol production at some moments during the day. Only in morning it is usually low. Especially after exercise and stress it will be very high.

 

[alex3619]

Do you think the coritisol 'issues' in pwme are a direct result of ME or were they there in some form prior to onset ?

Very easy to answer: I don't think anyone knows. We need this researched.

 

[MeSci]

Here's the video where Dr Bansal lecture where he talks about his research, it's an interesting talk, worth watching:

I don't have time to watch the video, but was puzzled to hear him refer to 'nitrous oxide' at the start. I am not aware of any physiological processes involving nitrous oxide. Nitric oxide, yes. I am surprised to hear an apparently-renowned doctor/researcher make such an apparent elementary error.

 

[Sasha]

I don't have time to watch the video, but was puzzled to hear him refer to 'nitrous oxide' at the start. I am not aware of any physiological processes involving nitrous oxide. Nitric oxide, yes. I am surprised to hear an apparently-renowned doctor researcher make such an apparent elementary error.

Sometimes people's brains just pull out the wrong word and it gets stuck in a loop. I wouldn't necessarily read anything into it.

 

[duncan]

Interesting conversation from a personal perspective. I recently have been told I am hypothyroidal - out of range high TSH values - but also told I have elevated out of range cortisol values. Can't quite figure out that high cortisol with my limited research. Maybe my cortisol circadian clock is screwed up, as @alex3619 suggested can happen.

For me it gets more interesting because I have documented damage to my 8th cranial nerve, and thrice documented cognitive decline, most recently and dramatically in memory. So the hippocampus and hypothalmus areas of the brain - or at least that general area - may have been/are particularly impacted. Oh, can't forget the little global brain atrophy, as shown three times via MRIs.

Add to that the purported tissue tropism of Lyme, and that leaves the thyroid susceptible and the adrenals, not to mention the brain.

Or, it's not Lyme, but the systems' malfunction has to be attributed to something.

I see an endo this afternoon. Can't wait to see his face when I volunteer I have diagnoses for both late stage Lyme and ME/CFS.

 

[Biarritz13]

I am quoting this link.


"Dr. Bansal mentioned the Lightening Process and thought that it may only be beneficial to the mild and moderately affected but as there is no research on the topic, no conclusions could be made. He also thought the eye-movement desensitisation technique was interesting but probably only useful for mild/moderate cases. His thoughts on the Gupta methods were along the same lines. His beliefs for how these therapies might work relate to the role of memory and how some people with CFS/ME experienced a stressful event around the time they became ill. This stressful situation would have increased levels of cortisol and adrenaline and this could have increased the perception and memory at the time. Subsequently, intrusive memories could possibly cause symptoms later when the mind goes over the events and this could result in fatigue."

"Dr Bansal expressed his concerns over costly treatments and mentioned a recent patient who told him about his experiences with Dr Melier. This patient had a positive urine test but it seems that everyone comes out with a positive result from this test. The clinic seems to encourage patients to pay for many further tests and the benefits of these are unknown (but expensive; this patient spent €1,300 in total)."


Anyone heard about Dr. Melier?

 

[adreno]

Anyone heard about Dr. Melier?

He likely is referring to Kenny De Meirleir, a well known ME/CFS doctor in Belgium.

 

[duncan]

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

 

[A.B.]

This patient had a positive urine test but it seems that everyone comes out with a positive result from this test.

I'm assuming he means the urine neurotoxin test by de Meirleir. I didn't test positive.

 

[Biarritz13]

He likely is referring to Kenny De Meirleir, a well known ME/CFS doctor in Belgium.

I'm assuming he means the urine neurotoxin test by de Meirleir. I didn't test positive.

Okey, I wasn't sure but good to know A.B. you tested negative

 

[Helen]

"Dr Bansal expressed his concerns over costly treatments and mentioned a recent patient who told him about his experiences with Dr Melier. This patient had a positive urine test but it seems that everyone comes out with a positive result from this test. The clinic seems to encourage patients to pay for many further tests and the benefits of these are unknown (but expensive; this patient spent €1,300 in total)."

It would surprise me if a proposed treatment was based on the result of a single test result. As a patient of KDM I know what an extensive testing he does at the first consultation based on a questionnare, earlier lab testing and an interview about sick history. I never saw a doctor with the same presence during this first appointment. When you have booked an appointment you get a letter with information and a message of the expected cost for the tests so they shouldn´t be a surprise. The costs for every single test are in accordance with the costs at a private specialist in my country.

It is possible to bring lab results from e.g. your GP to bring down the cost. If you have been examined for e.g. thyroid problems earlier you can just exclude this part of the tests. You always sign and agree to the proposed lab tests. On request KDM motivates any tests.

In my opinion the above quoted formulation is insulting and desinformation. @Theodore , not your fault. You just asked about an opinion.

 

[FTY]

I am quoting this link.


"Dr. Bansal mentioned the Lightening Process and thought that it may only be beneficial to the mild and moderately affected but as there is no research on the topic, no conclusions could be made. He also thought the eye-movement desensitisation technique was interesting but probably only useful for mild/moderate cases. His thoughts on the Gupta methods were along the same lines. His beliefs for how these therapies might work relate to the role of memory and how some people with CFS/ME experienced a stressful event around the time they became ill. This stressful situation would have increased levels of cortisol and adrenaline and this could have increased the perception and memory at the time. Subsequently, intrusive memories could possibly cause symptoms later when the mind goes over the events and this could result in fatigue."

"Dr Bansal expressed his concerns over costly treatments and mentioned a recent patient who told him about his experiences with Dr Melier. This patient had a positive urine test but it seems that everyone comes out with a positive result from this test. The clinic seems to encourage patients to pay for many further tests and the benefits of these are unknown (but expensive; this patient spent €1,300 in total)."


Anyone heard about Dr. Melier?

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

 

[Biarritz13]

It would surprise me if a proposed treatment was based on the result of a single test result. As a patient of KDM I know what an extensive testing he does at the first consultation based on a questionnare, earlier lab testing and an interview about sick history. I never saw a doctor with the same presence during this first appointment. When you have booked an appointment you get a letter with information and a message of the expected cost for the tests so they shouldn´t be a surprise. The costs for every single test are in accordance with the costs at a private specialist in my country.

It is possible to bring lab results from e.g. your GP to bring down the cost. If you have been examined for e.g. thyroid problems earlier you can just exclude this part of the tests. You always sign and agree to the proposed lab tests. On request KDM motivates any tests.

In my opinion the above quoted formulation is insulting and desinformation. @Theodore , not your fault. You just asked about an opinion.

I don't think the price is relevant in any case. 1300 euros is a low rang price for appointment and testing, since the average for KDM is near 3000 to 3500 euros, I wasn't sure if it's was him or not.

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.

 

[Sidereal]

Subsequently, intrusive memories could possibly cause symptoms later when the mind goes over the events and this could result in fatigue.

Just like that.

 

[SOC]

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.

Subsequently, intrusive memories could possibly cause symptoms later when the mind goes over the events and this could result in fatigue.

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.