The Gupta Program and XMRV: discussion

[dannybex]

Hi Zoe...

ITA with this. I think it's very useful in terms of having opened up the flood gates concerning what biomarkers doctors have been seeing (MRIs, SPECT scans, cytokine levels, NK function) that have been relatively quiet until this finding.



This is quite interesting, especially the concept of Gupta's method as rehabilitation. I agree that the improvements reported are compelling and need to be investigated further! I had a conversation some months ago with a woman (who works for my ND) and brought up the amygdala retraining technique and asked her for her thoughts. She said that she had had a significant head injury due to a car accident and had to re-learn to speak, write, etc. and very much believed in the possibilities of "retraining."

If Gupta presented his program as such, and had not suggested that XMRV was likely no more important than any other bug found to be residing in CFS patients, I would be a huge supporter. It is my own hang up that I cannot get past his calling it a "cure." Also, just based on my own experience over the years and what I see/hear of other cases, I do believe physiological damage must be repaired in order to improve neurological functioning (even to the point of one being able to take full advantage of Gupta's program).

You make many great points that I agree with Zoe, but with the greatest respect to a fellow Northwesterner(!), to the best of my foggy-brained recollection, I don't believe even Gupta has used the word 'cure' with regards to his protocol. He does repeatedly say 'you can get better', over and over again, but don't think he's claimed the 'c' word yet.

As I mentioned earlier in this thread, I know a woman who has been helped substantially by using Gupta's CD's and DVD's. She isn't 100% at all, but almost has her regular life back...this after being sick for at least 13 years. Last week she gave a piano recital, when 2 years ago she could barely sit up.

If I hadn't known her BEFORE she got better, I wouldn't have believed it. It always helps when you personally know someone who's tried something that most people would automatically consider woo-woo.

At the same time, I've also written to him and disagreed with the whole chicken and the egg situation. He says CFS/ME is caused by the amygdala overreacting, and that is why the immune dysfunction happens. I think he might have that backwards...that certain things (viruses, environmental stressors, intestinal permeability, fungal infections, XMRV?, etc.) are what cause the amygdala to go into overdrive, and when those things are dealt with, the 'a' calms down. For example, with candida overgrowth, one of the main symptoms is extreme anxiety. When the the overgrowth is tamped down, the anxiety often goes down as well...

I also was after him to post videos of patients of his who had been ill for longer than 2-3 years, and to also post follow-ups of those patients who were claiming to be well...but only a few months after doing his protocol. He said he would...but a year or so later, he hasn't.

Nevertheless, if lowering one's stress by whatever means (including Gupta's methods) will help us improve to some extent, then his and other's methods should definitely be at the very least considered...

Anyway, just my two cents.

Dan

 

[MEKoan]

At the same time, I've also written to him and disagreed with the whole chicken and the egg situation. He says CFS/ME is caused by the amygdala overreacting, and that is why the immune dysfunction happens. I think he might have that backwards...

Hi Dan,

You make some very important observations.

I practice mindfulness, including meditation, and find it tremendously helpful. Frankly, I cannot imagine anyone not finding it helpful for anything. It is, after all, the greatest antidote to "suffering" ever devised. It is so potent that it has been rejigged, renamed, reclaimed and resold, over and over again, for 2500 years. It works.

The brains of Buddhist monks have been scanned during meditation and found to behave in ways which are different from the brains of non-meditators.

My practice has improved my health as much as antibiotics and has made contending with the times of ill health much easier to manage. Nevertheless, I still got what I got.

My experience may mean little but I find it very telling that the much admired Buddhist Nun and teacher, Pema Chodron, has been unable to rid herself of ME. I really find it hard to believe that Gupta's patients can accomplish in such a short time what this extremely accomplished practitioner has been unable to do with decades of practice, teaching and understanding.

As others have said, his program would be helpful for anyone dealing with chronic illness or recovering from any number of illnesses or injuries. His stubborn refusal to be flexible regarding his paradigm is unfortunate and makes me wonder if he understand what he preaches.

1 cent, max.
Koan

 

[zoe.a.m.]

You make many great points that I agree with Zoe, but with the greatest respect to a fellow Northwesterner(!), to the best of my foggy-brained recollection, I don't believe even Gupta has used the word 'cure' with regards to his protocol. He does repeatedly say 'you can get better', over and over again, but don't think he's claimed the 'c' word yet.

As I mentioned earlier in this thread, I know a woman who has been helped substantially by using Gupta's CD's and DVD's. She isn't 100% at all, but almost has her regular life back...this after being sick for at least 13 years. Last week she gave a piano recital, when 2 years ago she could barely sit up.

If I hadn't known her BEFORE she got better, I wouldn't have believed it. It always helps when you personally know someone who's tried something that most people would automatically consider woo-woo.

At the same time, I've also written to him and disagreed with the whole chicken and the egg situation. He says CFS/ME is caused by the amygdala overreacting, and that is why the immune dysfunction happens. I think he might have that backwards...that certain things (viruses, environmental stressors, intestinal permeability, fungal infections, XMRV?, etc.) are what cause the amygdala to go into overdrive, and when those things are dealt with, the 'a' calms down. For example, with candida overgrowth, one of the main symptoms is extreme anxiety. When the the overgrowth is tamped down, the anxiety often goes down as well...

I also was after him to post videos of patients of his who had been ill for longer than 2-3 years, and to also post follow-ups of those patients who were claiming to be well...but only a few months after doing his protocol. He said he would...but a year or so later, he hasn't.

Nevertheless, if lowering one's stress by whatever means (including Gupta's methods) will help us improve to some extent, then his and other's methods should definitely be at the very least considered...

Anyway, just my two cents.

Dan

I think you might be right Dan--and this Northwestern import takes no offense--about the word "cure." For several months I was reading the Gupta thread at the chronicfatiguetreatments site and there were some folks who'd been working the program for up to 2 years and who had long threads with questions about how Gupta measured "full recovery"--that one I'm pretty sure of! It seemed there was some confusion and frustration that the "fully recovered" group either could socialize and exercise some, but not hold any employment--or that some might be able to do part-time or volunteer work, but not do any exercise without relapse. To me this is all encouraging, but suggests that either permanent damage has been done in one or more systems, or that people may be able to control the disease with these techniques but that the mechanism of the disease isn't really being addressed.

I very much agree with your feelings that Gupta might have his chicken and the egg a bit backwards--if I even believe the two can be separated at all in the case of CFS/ME! One big concern that came up for me was that people might start to consider all CFS symptoms as a "wiring" issue (i.e. reacting as though there is a threat where there isn't one) and push past where they should. I know Ashok warns against pushing past symptoms, but that's pretty subjective and I just haven't felt confident enough about what this disease is to be confident that the symptoms aren't sometimes of a protective nature. Other illnesses can be helped with these types of techniques but the person still knows "I have CHF" or "I have hepatitis" (etc.) and knows that a pathology underlies their symptoms (and doctors do as well). As experts keep stating: "this is a heterogenous group," so general advice to all probably isn't appropriate.

All in all, he's not a medical doctor and I just worry that his genuine enthusiasm could harm a population he doesn't fully understand.

I do wish I knew someone personally who'd gone through the program and had benefited as much as your friend, and I'm very happy to hear she is doing so well and enjoying life again! On a side note, it's great to see "woo-woo" in your post--I use that term often enough (I live in the woo-woo capital of WA) and I don't think I've ever heard a fellow NWesterner use the term!

We've got to look at stress! Gupta has it right about that for certain. But stress is an epidemic in the US and causing rampant illness of all kinds! Also, after taking bio and organic chem classes, I was awed by how the most minute substances could wreak havoc at a cellular level that might never be found or investigated! For the last 50 years (plus, of course), so many chemical substances have made their way into the food and water supply, housing materials, and so forth. Just the estrogen-like compounds in plastic can wreak havoc (and that's one that is fairly well understood and public); who's to say what types of stressors our DNA have been undergoing for decades? It's my belief that humans are built to withstand much stress--stress we can't even imagine in the modern world--though not the miserably chronic type with no end or outlet that's become the American lifestyle, but the molecular interference that's now a part of our lives suggests there is a much worse type of stress.

The brains of Buddhist monks have been scanned during meditation and found to behave in ways which are different from the brains of non-meditators.

My practice has improved my health as much as antibiotics and has made contending with the times of ill health much easier to manage. Nevertheless, I still got what I got.

My experience may mean little but I find it very telling that the much admired Buddhist Nun and teacher, Pema Chodron, has been unable to rid herself of ME. I really find it hard to believe that Gupta's patients can accomplish in such a short time what this extremely accomplished practitioner has been unable to do with decades of practice, teaching and understanding.

As others have said, his program would be helpful for anyone dealing with chronic illness or recovering from any number of illnesses or injuries. His stubborn refusal to be flexible regarding his paradigm is unfortunate and makes me wonder if he understand what he preaches.

It was only within the last year that I found out that Pema Chodron has ME and it reminded me of my old teacher who had heart problems. Mindfulness which comes from Buddhist traditions isn't about 'improvement' and it isn't really about 'seeing positive change!'--it's about being with things how they are. The neurolinguistic side of Gupta's program doesn't mesh well with me for this reason.

In a way, I suppose I could see Ashok as the unlucky one here because, if he had created a program for a disease that was even considered a disease, his advice/beliefs could be a complement. Because the dx is still such a confusing and unaccepted thing, to offer a "full recovery" program for it is a little premature, imo.

Sorry for the length guys!

 

[susan]

Too foggy headed to debate this but there is Mum in New Zealand with CFS and 2 CFS daughters,.....Mum is out water rafting after being wheel chair bound for many years, one daughter doing really well and the other not as great...all on Gupta program. We correspond.

There is an elderly gentleman also in NZ I have regular contact with who is also well again especially after he got his breathing right then taught me.

There is woman in Germany who did Gupta and recovered quite quickly and was coaching me for some time.

There is my friend in bed for 13 years also roaming around the world well.

I have been a staunch supporter of his program and still believe in what he says about this illness. I have had personal dealing with him on the phone, and I have to say he is one of the nicest humane people you could ever meet.

Me.......So far it has not worked after 1 yr...no change. His program as you know makes you block negative thoughts about your body to stop the Amygdala from working overtime. My trouble was I did not have these negative thoughts I believe.

I purchased a Stress Eraser as I was told that when the heart rythmns went out of sync, you were having negative thoughts. It does not ring true as I am erratic in the mornings when I am calm and cortisol is very low. However I can be a bit stressed at night after making dinner and yet I get a perfect score then.

So we can really debate all this stuff endlessly but in a nut shell some people DO get better.

If you read Prof Ledouxs work on the Amygdala it makes interesting reading

 

[dannybex]

I don't understand, Susan. If Gupta's hypothesis is that negative thoughts are causing the amygdala to work overtime, which causes CFS, and you do not have these thoughts, and you do have CFS, then does this mean that his system works only for those whose CFS is caused by negative thoughts and does not work for those whose CFS is caused by something else?

Sorry, I'm not Susan(!), but 'blocking negative thoughts' is only 1/4 of the program, if that.

The main thing that helps me is his meditation CD, especially the 'soften and flow' part, which involves a lot of relaxation and deep breathing. Even in that CD, one can find things to argue with (like when he says at the end..."okay, go out and enjoy your day"...(paraphrasing). Depending on one's level of disability, that can be extremely difficult, to say the least.

But every time I listen to that CD -- just the first 20-25 minutes, I am able to feel and function better...not as overreactive or overstimulated.

d.

 

[dannybex]

Zoe...and Koan...

Again, many good points.

It is very interesting that they did a study here in Washington State a few years ago, where they found all these chemicals, plastics, pesticides, etc., in 30 citizens from all walks of life.

Only a few of them were disabled with chronic illness. Perhaps some of those who seemed completely healthy may unfortunately be suddenly stricken with some other illness, but it is always fascinating how some people can drink and smoke and eat Hot Pockets (just as one example!) and live to be 100, while marathon runners with low cholesterol drop dead in their 30's of heart attacks.

I had never heard of Pema Chodron, but then again I doubt she's heard of me. Just wanted to clarify that I wasn't saying that meditation (or 'active resting) alone is the answer to recovery, just a piece of the puzzle that most of us keep ignoring...myself included. We've talked about doing a 'pushing and crashing' thread or more specifically "WHY do we push" when we know we should be resting, but if I start that right now...I'll be pushing!

Perhaps there are other factors for the nun that haven't been addressed, like environmental triggers, or other 'stressors'...I don't know.

You would certainly know more than I Koan, but just checking her wikipedia page, it says "Her health gradually improved, she claims, with the help of a homeopath and careful attention to diet."

You're so right about Gupta's inflexibility. He doesn't seem to realize at all how it's hurting the legitimate parts of his theory...

Take care,

Dan

 

[dannybex]

Thanks, Danny. I have been meditating for, well, 46 years now. I understand meditation and its many benefits. But meditation is certainly not unique to Gupta's program. There are many fine methods of meditation used all over the world for thousands of years. I was wondering about the Gupta Program. I am trying to figure out what about it is unique, and so far it seems that it is the work with amygdala. Blocking negative thoughts, however, is not new either. This has also been used for at least hundreds of years--the Science of Mind philosophy comes to mind.

Yeah, it's nothing new really...but just applied to patients with CFS/ME...(and it seems mostly young, not ill for too long patients...)

Something else that has helped myself and some in our group has been EFT...there's another thread or two on that...but I found that it's just like any other therapy...it depends a lot on the skills of the practitioner. One can (and is supposed to) practice it every day at home, but I think it's critical to start off by seeing an experienced practitioner who can see you objectively.

It's surprisingly helped me deal with buried resentments, anger, grudges (family and friends and doctors not understanding, etc.,)...emotional aspects that may...may...interfere with healing.

Just my two pennies,

Dan

 

[kurt]

moving on

I have been a staunch supporter of his program and still believe in what he says about this illness. I have had personal dealing with him on the phone, and I have to say he is one of the nicest humane people you could ever meet.

Me.......So far it has not worked after 1 yr...no change. His program as you know makes you block negative thoughts about your body to stop the Amygdala from working overtime. My trouble was I did not have these negative thoughts I believe.

Hi Susan,
I have developed a treatment rule over my 10+ years with CFS. No matter how compelling the testimonials for ANY treatment related to CFS, if I have not had major improvements that are sustainable after one year, it is probably time to move on. We do not have forever to solve this. I have made mistakes before, stayed on one treatment for two years that was probably hurting me, that led to my one year rule.

Here is an example, and an aside, I just finished my 'one year' testing MMS, and that was really interesting. I know a person with CFS (only six months though) and he recovered completely with MMS, using a full dose, he is now on maintenance doses. Well I tried it, and lower doses were really helpful, my energy level improved several hours each day. But I just could not get the dose high enough to 'finish off' any infection, and do not want to take it forever. So I pretty much gave up on MMS for CFS, at least in my case. It now joins my oversized collection of treatments tried, to be used now and then for what I know it can do, at low doses only...

What works for one PWC may not work for another.

Right now I think we are in the XMRV 'year long trial'. I am getting tested and am trying to take more natural antivirals (esp. olive leaf) and will see where that leads. A year from now the whole XMRV idea may be a bust, then it will be time to move on. Will be interesting to see.

--Kurt

 

[MEKoan]

It was only within the last year that I found out that Pema Chodron has ME and it reminded me of my old teacher who had heart problems. Mindfulness which comes from Buddhist traditions isn't about 'improvement' and it isn't really about 'seeing positive change!'--it's about being with things how they are. The neurolinguistic side of Gupta's program doesn't mesh well with me for this reason.

Hi Zoe,

I don't know very much about Gupta and his program. But, I think there is validity to my observations even with my very shaky take on Gupta.

While you are quite right about Buddhist philosophy, Buddhists, like all people, attend to themselves and seek healing when they are ill. His Holiness the Dalai Lama, for instance, seeks first traditional Tibetan remedies and then western ones when he is ill.

That being the case, all skill is brought to healing. A skillful mind is employed to assist returning to health and, certainly, unhelpful attitudes would not be courted. But, yes, calm abiding with what is underlies everything. Doesn't mean one does not apply the bandage, drink the tea, take the pill or employ skillful mind to encourage healing.

What I don't grasp, and where my comments are not on point, is the focused attempt to alter the functioning of the brain in a specific way which seems to be the Gupta program. Thanks for raising that issue, Zoe. I glossed right over it.

Nonetheless, there is no merit in not employing skillful means if they would restore health so Monks and Nuns would do so. This life is precious.

What they would not, necessarily, do is the Gupta program. Would Ani Pema be able to heal herself without the specifics of his program? I am not familiar enough with what he recommends and should go away and be quiet now.



with metta,
Koan

 

[zoe.a.m.]

It is very interesting that they did a study here in Washington State a few years ago, where they found all these chemicals, plastics, pesticides, etc., in 30 citizens from all walks of life.

Only a few of them were disabled with chronic illness. Perhaps some of those who seemed completely healthy may unfortunately be suddenly stricken with some other illness, but it is always fascinating how some people can drink and smoke and eat Hot Pockets (just as one example!) and live to be 100, while marathon runners with low cholesterol drop dead in their 30's of heart attacks.

Dan, When I learned a bit (truly a bit!) about epigenetics a few years ago, I became a lifelong fan as I felt that it bridged an important gap between how people see genetic-environment-stress relationships (things that often end up on the psychology cutting-room floor). I'd have to go brush up to really make a cohesive point, but essentially, so many factors (including when a specific gene "turns on") make the outcome. If the offensive agent intrudes during a developmental phase when the gene is expressed, then you have a problem; otherwise, you might not have one at all. It's amazing stuff and this reminds me that I need to go back to reading about it.

I have developed a treatment rule over my 10+ years with CFS. No matter how compelling the testimonials for ANY treatment related to CFS, if I have not had major improvements that are sustainable after one year, it is probably time to move on. We do not have forever to solve this. I have made mistakes before, stayed on one treatment for two years that was probably hurting me, that led to my one year rule.

Interesting Kurt! It's very true that rarely does enough time pass that we can really measure the result of so many protocols or treatments out there for CFS/ME.

I don't understand, Susan. If Gupta's hypothesis is that negative thoughts are causing the amygdala to work overtime, which causes CFS, and you do not have these thoughts, and you do have CFS, then does this mean that his system works only for those whose CFS is caused by negative thoughts and does not work for those whose CFS is caused by something else?

Wildaisy, I agree with how confusing this is as it's presented by Gupta. I don't mean to compare apples to oranges, but a certain antibiotic generally works on anyone with a certain type of infection assuming they are being treated before the infection is too large and that it's not a resistant strain. I don't care for the idea that a person's subconscious blocks or negative thoughts are what is blocking someone's progress after a year on a program (not meaning to specify you Susan, just thinking of the many I've seen on Gupta's boards). I have seen, and experienced, the very costly quest for the unconscious blocks and can only offer my experience: it was appealing because it still meant that ultimately I was in control of what was causing my illness (another area to tackle/the final frontier) and practitioners who teach/coach this are excited to work with you for years and have an "it's another unconscious/subconscious development!" response every time you relapse, don't show improvement, aren't cured. This process can go on for years and years.

While you are quite right about Buddhist philosophy, Buddhists, like all people, attend to themselves and seek healing when they are ill. His Holiness the Dalai Lama, for instance, seeks first traditional Tibetan remedies and then western ones when he is ill.

That being the case, all skill is brought to healing. A skillful mind is employed to assist returning to health and, certainly, unhelpful attitudes would not be courted. But, yes, calm abiding with what is underlies everything. Doesn't mean one does not apply the bandage, drink the tea, take the pill or employ skillful means to encourage healing should healing be what is happening.

What I don't grasp, and where my comments are not on point, is the focused attempt to alter the functioning of the brain in a specific way which seems to be the Gupta program. Thanks for raising that issue, Zoe. I glossed right over it.

Nonetheless, there is no merit in not employing skillful means if they would restore health. This life is precious.

Koan, You did a much better job of explaining this! I realize I left out important details in trying to make my point about Buddhist or Buddhist-based mindfulness. My teacher did undergo surgeries while I was learning and all of the modalities that you mentioned were used. The difference was in the expectation of outcome and in the lack of 'blame' present if someone's health did not improve or if they succumbed to illness. That's a very different mentality than Western takes on mindfulness in my experience. To my mind, Jon Kabat-Zinn has done a good job in blending East/West and doing so in a very respectful manner. What I can't seem to express clearly is something like: with true mindfulness, you may find you are up against something outside of your control and then your work is to work with that, but not to have someone coaching you that the target is always moving (i.e. now it's subconscious, or fear-based, or unconscious).

I don't know if anyone understands the NLP part (the "focused attempt" I think) of Gupta's program per se. Only those who have used the program or have used another NLP program could speak to that and I am not one, but I did take time to research NLP as I was very excited by the idea of it, but found it to be a little less than convincing. I still am attracted to the idea of--recoaching the brain--but it feels a bit like putting wallpaper up over damaged plaster. It sounds good, but it won't be too long before you have got to deal with the wall. It also seems to be somewhat veiled in mystery, relatively expensive and very fast (2-3 day workshops) and those things always raise my antennae.

As I said in my letter to Ashok, "It is only because I find your analysis to be so rich with promise that I hold it to such a high standard!" Unfortunately, like I stated before, I got a blanket "skeptic" letter in return.

Susan, I have read much of LeDoux's research in this area and think it is incredible work. I don't personally feel that it's usage and goals are necessarily the same as in Gupta's program though. I am very glad that you feel hopeful about this program though and are able to speak to others who are having really positive results. I don't doubt anyone's results at all, and as Koan said, "this life is precious."

ETA: Koan "I better be quiet now" is a title of one of my favorite songs and I hope you stick around

 

[Cort]

I think ME/CFS is multidimensional and any way you get at it is good. I've done Gupta fitfully over the past year and half and its been very helpful overall. Its really been hard for me to grasp.

I've had a really hard time grasping those 'negative thoughts'; for the first year or so I basically noticed my body getting aroused again and again and I did things to tamp it down.

At times now I can access those thoughts and when I do it can be quite powerful. My sense is that ME/CFS patients - or at least myself - are in such a weakened state that negative thoughts and other stressors just discombobulate our systems. Many of those negative thoughts do not concern CFS or the body - they're just negative thoughts of all sorts that have unusually strong physiological consequences.

In that sense I think Ashok is right - I've found nothing that experientially so fits my situation. The initial cause of the situation is another question entirely. Surely an infection could create a state of agitation in the body/mind. We know that gastrointestinal problems appear to be able to produce a state of anxiety or 'arousal'.

But if you take the disease state you're in at the moment - then doing these techniques could very well tamp down the state of agitation its in - resting the body - and giving it more energy to heal and fight off whatever invader or situation that's present.

I think there are all sorts to ways to get at this. I just started doing myofascial massage on areas of my back that have been painful for about 30 years; to my astonishment not only did I feel better but my abdomen noticed loosened up allowing me to breathe much deeper. I didn't do this through meditation but through removing tension in my upper body.

 

[Christina]

It Makes Sense ...

That anyone who's made a living by marketing a push-button cure to CFIDS is going to try to adapt the new retrovirus discovery news to his program.

If you look at Dr. Teitlebaum's similar pooh-poohing of the new discovery on Psychology Today's blog -- you'll see similar sentiments.

The fact is -- following either Gupta's or Teitlebaum's regime -- for those with the time and money -- and Gupta's requires a lot of time, the latter a lot of money -- will find they can manage their conditions better.

Neither delivers on a full cure. But both offer treatments of wide use to the general population for general fatigue due to poor stress management and lifestyle factors. They can probably cure people who are a little run down and off-balance, and over significant quality of life improvement to CFS patients. But not a cure. So I understadn they feel blind-sided by this new discovery.

 

[dannybex]

Excellent points Kurt...

Hi Susan,
I have developed a treatment rule over my 10+ years with CFS. No matter how compelling the testimonials for ANY treatment related to CFS, if I have not had major improvements that are sustainable after one year, it is probably time to move on. We do not have forever to solve this. I have made mistakes before, stayed on one treatment for two years that was probably hurting me, that led to my one year rule.

Here is an example, and an aside, I just finished my 'one year' testing MMS, and that was really interesting. I know a person with CFS (only six months though) and he recovered completely with MMS, using a full dose, he is now on maintenance doses. Well I tried it, and lower doses were really helpful, my energy level improved several hours each day. But I just could not get the dose high enough to 'finish off' any infection, and do not want to take it forever. So I pretty much gave up on MMS for CFS, at least in my case. It now joins my oversized collection of treatments tried, to be used now and then for what I know it can do, at low doses only...

What works for one PWC may not work for another.

Right now I think we are in the XMRV 'year long trial'. I am getting tested and am trying to take more natural antivirals (esp. olive leaf) and will see where that leads. A year from now the whole XMRV idea may be a bust, then it will be time to move on. Will be interesting to see.

--Kurt

Excellent points Kurt. A woman who used to come to our local support group and is now recovered (after being sick for 16 years) figured out that she could easily become 'allergic' (that isn't quite the right word) to the remedies she was using, (and the foods she was eating) so as she got better she made a point of rotating both.

Also...I think it's important to remember that we need to not only consider the 'killing the bugs' aspect, but doing things that rest and strengthen the body and balance the immune system.

And the 'rest' thing, which can come in many forms, is often the one thing we don't do enough of IMHO.

 

[bertiedog]

About Anxiety Attacks and Negative Thoughts/Cortisol

Hi Cort

I am in the middle of a very real adrenal crash caused by too much thyroid medication building up in my system and completely messing up my already non functioning adrenals.

Its a fascinating situation from which I learn a lot and maybe others could too. I have in general had a great year best one since crashing in 2000. I have had so much good energy and done so much compared with other years ..... until this crash which happened quite quickly 2 weeks ago although looking back there were signs things were going wrong but I was too busy to notice them and was also feeling so well apart from the odd attack of raised heartbeats and sweating.

The thing is that now my adrenals are really struggling even with my normal dose of steroid, ie equivalent of 25mg hydrocortisone daily and ALL the symptoms I regarded as ME/CFS are back.

I am overreacting to everything even eating brings on an adrenaline attack which is felt as raised heartbeats, sweating, horrible anxiety and a very nasty type of dizziness felt in the back of my head. My balance is off, I look pale and ill and I cannot walk at all whereas just 2 weeks ago I could go off and have quite a full day with rests in between and really enjoy a good 30 minute daily walk, also I was looking and feeling so well.

How can I stop these attacks now developing and recover? The answer I realise is at the moment I need more steroid. I have just taken 2.5mg h/c plus a much needed betablocker because I have just had another attack after eating my evening meal. No amount of practasing Gupta deals with the attack because I have been trying this and it has failed miserably but medication, ie betablockers and steroid will stop the attack within 45 minutes and I will start to feel better.

So how am I going to get out of this crash and ME/CFS like symptoms? Its just become obvious that from tomorrow I will double up my Prednisolone dose in the morning from the usual 2.5mg to 5mg and add another 2.5mg around 4 pm and I feel confident the symptoms will go away fairly quickly so I can start to pick up on my life again hopefully.

I cannot tolerate any thyroid hormone at the moment so will go progressively hypothyroid and start getting other symptoms but for a while I guess I will have to let this happen.

My main point in posting is that for years I thought my symptoms of adrenaline rushes that went on for hours, caused severe balance problems and dizziness in the back of head, severe almost daily migraines and caused me to crash completely were psychological as per the Gupta model. But No they are not. My endocrine system has crashed and cannot recover and I need medication and when I get it right I feel great and the vast majority of my ME/CFS symptoms disappear and I get well again never 100% but pretty darn good compared to how I am at the moment and how I was from 1979-2002 till I got treatment for my endocrine system.

Pam

 

[MEKoan]

The difference was in the expectation of outcome and in the lack of 'blame' present if someone's health did not improve or if they succumbed to illness. That's a very different mentality than Western takes on mindfulness in my experience. To my mind, Jon Kabat-Zinn has done a good job in blending East/West and doing so in a very respectful manner. What I can't seem to express clearly is something like: with true mindfulness, you may find you are up against something outside of your control and then your work is to work with that, but not to have someone coaching you that the target is always moving (i.e. now it's subconscious, or fear-based, or unconscious).

Hi Zoe,

Ok, I'm a little more up on Gupta now. Not UP but not so much in the dark.

I think it's interesting that he practices on Harley St. I saw a Harley St. doc. once for decongestants before getting on a place -- cost more than the flight! Ok, that's hyperbole but it is a very high rent district in London. I think it is relevant that he practices what he does in that climate.

He draws on mindfulness, Yogic practice, ahhh... I forget what else but it's really not complicated stuff. I also think it probably works the way he says it does... to a point. My meditative practice certainly works for me... up to a point.

I am very chill as a result of my practice. I learned to respond where once I reacted. I have learned to notice the first tiny intimations of arousal and turn them around. I do this religiously! It really, really helps! I have a great deal of control over my physical self because I have learned to nip things in the bud and because I understand that I am, much of the time, at the controls.

The Buddha said: Nothing can harm you as much as your own unguarded thoughts. He also said, when pressed to teach, that the only thing he was interested in teaching, or even willing to teach, was suffering and how not to. Suffering when you need not do so is very unBuddhist. Bringing everything to bear to not suffer is very much at the heart of things. But, yes calmly abiding when needs must is very Buddhist because it, too, reduces suffering not because of any fatalistic attitude.

Ashok Gupta draws on this very tradition, as per his website, for his treatment. I remain convinced that Pema Chodron would be well if Ashok Gupta could cure people. I simply cannot understand why he would be more skillful at applying, and having his trained neophytes apply, the very stuff that she has studied for decades.

Kabat-Zinn has cited many interesting studies which indicate not only changes in the brain of meditators but also subtle changes in immune response. We can influence everything by changing our thoughts. I firmly believe that. But, it is the way of things that our influence works within certain parameters. If you are stabbed, you may be able to slow the flow of blood, but you cannot cause the skin to miraculously knit together again. Slowing the flow of blood could save your life. Abiding calmly will certainly change the experience of even this.

I don't know why people who would help us are not satisfied to say:
This will really help you.
You will feel much better.
You will also find what suffering you must endure is much less distressing. Your brain and body will change and you will be healthier and stronger.
But, I will not promise you a magic cure and, face it, one day you will die.

That would be so refreshing!

ETA: Koan "I better be quiet now" is a title of one of my favorite songs and I hope you stick around

I did! But, I think I oughta be quiet again now.

with metta,
Koan

 

[Cort]

I think Koan really captured what these types of therapies are all about in ME/CFS. They can be very helpful particularly with regards quality of life - a very important facet not only of illness but of life in general. We shouldn't underestimate that; in some sense quality of life is our goal in life - not health.

With regarding a 'cure' - some people do say they've been cured and are now leading a normal life. I received several emails from people who state that. My sense is that with these intriguing treatments of all kinds - a certain percentage of people respond very well. Someone emailed me stating that the methylation treatment had completely cured - she is definitely an outlier!

I definitely continue in my rather shoddy fashion these practices because I have found them very beneficial to my quality of life and of course that means with some extent to my health as well.

I don't know about Pema - I just saw an article that said she'd recovered and if she hasn't recovered she was strong to lead a monastery or whatever you call them - something she described as being incredibly stressful. Whatever her case is it sounds like she's pretty strong now (?)

I dont think its about psychology at all; I think its about a process in our body that's making us ill and overactivated and there are ways to tamp down that overactivation.

I don't know alot about meditation but what appears to be different about me is the more active approach to mindfulness that Gupta takes. First you notice the arousal in your body - then you see if you find out what stimulated that - then you imagine yourself into a healthy state - you go back into a meditative state - look at everything objectively and then you purposely put yourself back into that healthy; twice during the process you're actively putting yourself into as healthy a state as possible.

Its a fascinating situation from which I learn a lot and maybe others could too. I have in general had a great year best one since crashing in 2000. I have had so much good energy and done so much compared with other years ..... until this crash which happened quite quickly 2 weeks ago although looking back there were signs things were going wrong but I was too busy to notice them and was also feeling so well apart from the odd attack of raised heartbeats and sweating

Bertie - I'm also struck when people are doing really well relapse. Its the most extraordinary thing. I can understand why people who are doing poorly relapse - but why when you're doing better?

Good luck on those hormones! My idea about Gupta is that it attacks the problem from the other end; its not the negative thoughts per se - its the inability of the body to deal with ANY negative thoughts. By calming the system down bit by bit you start to strengthen it and heal it.

Ashok has said some very ill people have gotten alot better with AR but it may be that when you get to really ill states - when your system is going bonkers as yours is - that it has limited effects - it may only go so far. A study found that people with low cortisol levels did not respond well to behavioral types of treatments; people with higher cortisol levels did much better.

I think you try it all in this disorder - what works works. I hope you feel better soon.

 

[MEKoan]

Hi Cort,

Nice to see you! Can you point me towards the interview with Ani Pema, please! Her Abbey is here in Canada - Gampo Abbey, in Nova Scotia.

Thanks much,
Koan

 

[Snowcat]

Hormones

I'm very curious about Bertiedog's post as I am also on thyroid and cortisol, as well as progesterone, testosterone, DHEA and pregnenolone, and this replacement therapy has been the only thing that has genuinely helped me out of the many things I've tried.

I don't want to hijack this thread about Gupta, so I'm wondering if it might be possible to set up a discussion area for hormone replacement in general? I don't know if it's a subject of enough interest to have its own section or if it should just go under the General treatment section.

Thanks!

 

[bertiedog]

Why I crashed

Hi Cort

I crashed cos I was consistently overdoing things over a period of many months. Because I am totally reliant on the amount of cortisol I take plus my thyroid meds I should have upped my cortisol to cover the extra stress on my body but I didn't and didn't figure out the bad attacks that were happening on the odd day.

Its so difficult when one is a typical Type A personality, I thought I had learned so much but I still get it wrong! My GP has told me straight I have to stop doing so much charity work cos my body cannot cope with it so I definitely will cut back, its not worth suffering in this way.

BTW I first got sick in 1979 after 2 weeks of flu and the vertigo, and almost daily migraines followed within 2 weeks but didn't get any endocrine treatment till 2002 when in a crashed state. I am very interested in the XMRV thing and would love to get tested soon but live in the UK. I also have had mercury poisoning which I seem to have got rid of after amalgam removal and chelation but still have too high levels of nickel blocking my ATP. All very complicated!

Thanks so much for all that you do.
BW
Pam