Daily Mail - yoga cures myalgic encephalomyelitis

[duncan]

Personally, I always enjoy when someone - anyone - refers to him/herself by their first name. To do it three times in a single paragraph is way cool.

Like Dennis Quaid in that Ellen bit where he announces as he walks into a bank, "Dennis Quaid is here!"

 

[Mij]

is "worked" another term for cured now?

 

[Snowdrop]

Cort would have had this story on Phoenix RIsing in a second. Cort, in fact, did have stories like this on Phoenix Rising while he was here. Cort's commitment was to provide access to any treatments that worked in the hopes that if they worked for one person somebody else might benefit.

Cort wasn't focused on what the treatments were - he was and is focused on the fact that someone was helped. So long as the story was legitimate and the person had some form of ME/CFS he (I) was very glad to bring them to the community. Dan Moricoli clearly had a ver severe case of ME/CFS.

Yes, blog number two will focus very heavily on yoga - something that in this case, for this person, has been very helpful. ME/CFS is a very heterogenous disease. Giving that heterogeneity I would expect all sorts of approaches to work for one person or the other.

The financial model for Health Rising is the same as it was for Phoenix Rising - it's almost entirely donor driven.

I guess it all depends on the definition of what is ME.

My understanding is that yes, there are a variety of subsets or even that the community of people with similar symptoms for which there is as yet no biological marker to distinguish them may have different but similar illnesses but at the core of ME is a pathophysiology that is not curable through diet, yoga etc.

If someone has similar symptoms and fatigue but not PEM perhaps they are indeed helped by these therapies, especially if their illness is not severe. This group of ill people deserve treatments that work for them they deserve assistance and validation of their illness. But linking their plight to those with PEM ME does a great disservice to that specific population of ill people in my opinion.

I've said it elsewhere, I lived in Vancouver for a decade while ill. A place where there is an abundance of alternative treatments. I have earnestly tried many things when I became seriously ill at that time. This included yoga, Tai Chi, Qi Gong, meditation etc.

Having spent some time getting to know this illness it seems to me that PEM ME is the illness that is not being validated, acknowledged or adequately considered and this is in part due to it's affiliation with not PEM fatigue illness for which as you have pointed out people do seem to recover from and are able to access useful treatments.

People who are newly ill or their caregivers or even people just interested in learning about ME/CFS/SEID will not easily be able to parse this (rather important) difference. If we muddy the distinction then everyone with PEM ME suffers as a consequence of the continued belief that yoga will cure what ails you. Yes, I know we know better (you can call them subgroups who respond to different treatments) but the reality is that the 99% don't know and the misinformation doesn't get corrected --at least not by those who will not make clear the distinction.

People with vested interests in exercise therapies or in just ignoring a need for PEM specific treatment modalities will continue to flourish all the more. Until there is a biomarker for PEM ME this community must recognise that political aspect of PEM ME even if they prefer to withdraw from the fray.

 

[worldbackwards]

We are a non-profit and none of the donations go to paying our wages because not one volunteer here gets paid. Donations are used to run the website, for articles, and other projects. We do not allow any form of advertising from the authors of books, blog owners who make money from their blogs, private clinics etc.

I remember when my local support group ran out of lottery funding a few years ago. Their very next newsletter featured endless references to The Lightning Process and EFT and we got treated to plenty of Gupta down the years as well. I can't say I ever trusted them again.

In a situation like this where influence over patients is highly sought after and often malign, PR's model is the only ethical way to go.

 

[Cort]

I guess it all depends on the definition of what is ME.

My understanding is that yes, there are a variety of subsets or even that the community of people with similar symptoms for which there is as yet no biological marker to distinguish them may have different but similar illnesses but at the core of ME is a pathophysiology that is not curable through diet, yoga etc.

If someone has similar symptoms and fatigue but not PEM perhaps they are indeed helped by these therapies, especially if their illness is not severe. This group of ill people deserve treatments that work for them they deserve assistance and validation of their illness. But linking their plight to those with PEM ME does a great disservice to that specific population of ill people in my opinion.

I've said it elsewhere, I lived in Vancouver for a decade while ill. A place where there is an abundance of alternative treatments. I have earnestly tried many things when I became seriously ill at that time. This included yoga, Tai Chi, Qi Gong, meditation etc.

Having spent some time getting to know this illness it seems to me that PEM ME is the illness that is not being validated, acknowledged or adequately considered and this is in part due to it's affiliation with not PEM fatigue illness for which as you have pointed out people do seem to recover from and are able to access useful treatments.

People who are newly ill or their caregivers or even people just interested in learning about ME/CFS/SEID will not easily be able to parse this (rather important) difference. If we muddy the distinction then everyone with PEM ME suffers as a consequence of the continued belief that yoga will cure what ails you. Yes, I know we know better (you can call them subgroups who respond to different treatments) but the reality is that the 99% don't know and the misinformation doesn't get corrected --at least not by those who will not make clear the distinction.

People with vested interests in exercise therapies or in just ignoring a need for PEM specific treatment modalities will continue to flourish all the more. Until there is a biomarker for PEM ME this community must recognise that political aspect of PEM ME even if they prefer to withdraw from the fray.

"If someone has similar symptoms and fatigue but not PEM perhaps they are indeed helped by these therapies, especially if their illness is not severe. This group of ill people deserve treatments that work for them they deserve assistance and validation of their illness. But linking their plight to those with PEM ME does a great disservice to that specific population of ill people in my opinion."

Did you read Dan's story?....Just getting on the treadmill was enough to give him seizures...he could barely move for months after becoming ill..he started off doing minute levels of exercise - always using his heart rate monitor. As soon as he started feeling fatigued he stopped. The reason he stopped is that a) he knew he would start having seizures and be unable to talk properly and b) then he fall really apart and have to put himself in a dark rooms or hours or more - lying completely still with no stimulation.

Unless you're going to just to choose to ignore stories like this - or find a way to discount them - I think you have to come to grips with the fact that some people who are very ill do recover using these means. Other people who are very ill - such as yourself - do not.

That's not politics - it's just being accurate. I don't think a lot of people recover the way Dan did. I don't think a lot of people recover period.The people who do recover from this illness do so using a wide variety of treatments -- from Rituximab to antivirals - to diet - to using very rigorous pacing and in Dan's case, a cautious heart rate based "exercise" program and finally a mind/body approach.

I assert this is a PEM story to the core - and Dan does not say yoga will cure you. He says "Pacing is everything" and that he found yoga to be helpful as well.

Dan has gone from being almost completely disabled to being able to work and exercise (lightly) and lead a near normal life. However, it happened, I think that's something to celebrate.

 

[Cort]

Another story of yoga facilitating recovery from ME/CFS:

On the Path: Dan Moricoli's Remarkable Chronic Fatigue Syndrome Recovery Story - Health Rising

Actually it's more accurate to say that very rigorous pacing program, a heart rate based exercise program under the guidance of Dr. Klimas plus yoga (later) all came together for Dan.

 

[lansbergen]

plus yoga (later) all came together for Dan.

Thats the clue. Later.

 

[MeSci]

Actually it's more accurate to say that very rigorous pacing program, a heart rate based exercise program under the guidance of Dr. Klimas plus yoga (later) all came together for Dan.

and diet. I do believe know that diet can make a huge difference for many of us, although I personally would not choose the particular changes he made (I am already vegan so that change was irrelevant to me anyway!).

I am also a believer in doing useful/practical things with one's limited energy rather than exercise for the sake of it, but I guess it is OK for people who have others to do the boring stuff like shopping, cooking, etc.

"Sorry, dear - I can't get the dinner out of the fridge/load the dishwasher/washing machine, lay the table, make the bed, feed the cat, get the mail, prune the hedge...I'm tired from my exercise."

 

[Wayne]

Terrible cognitive function day for me, so excuse me if this doesn't fit in with the discussion. -- It seems to me that anything we do to reduce stress in our bodies is going to improve the functioning of our immune system. Anything that improves our immune system functionality is likely to benefit a given person's overall symptoms. I guess I don't understand why it would be controversial for a person who's had this experience to offer a testimonial on how they improved their health by strict pacing and yoga exercises to reduce stress. Am I missing something?

It seems to me that most pwCFS would not improve as dramatically as Dan. But I'm guessing we've all discovered that pacing and relaxing helps us to a degree, whether it's marginally better, stayiing even, or even slowing our deterioration. We're all individuals with different makeups. I don't think anybody is claiming yoga is a cure all, it's just a key component that happened to work very well for Dan. I appreciate him sharing his story and his regimen. I'm not sure I'd have the courage to do so if I was in his place, given the almost certain criticism that would follow.

 

[lansbergen]

It seems to me that anything we do to reduce stress in our bodies is going to improve the functioning of our immune system. Anything that improves our immune system functionality is likely to benefit a given person's overall symptoms. I guess I don't understand why it would be controversial for a person who's had this experience to offer a testimonial on how they improved their health by strict pacing and yoga exercises to reduce stress. Am I missing something?

I think you are right.

 

[Cort]

There are recovery stories on Health Rising from people who fixed their ME/CFS with diet – and people will say – just change your diet! There’s a story on the Forums for someone for whom it was thyroid. Another person for whom it was sinus surgery. There are several antiviral success stories. We’ll surely have Pridgen protocol success stories on there, I’m sure we’ll have Synergy success stories – and then people will say – just take your vitamins and you’ll be well! People will say with regards to Dan's story - just pace and do yoga!

Unless we’re not going to tell people about how people recover – which we’re not going to do – there’s just no around the mess..It’s a messy situation and it's going to be a messy situation for a long time.

All I can do is emphasize that this a very heterogenous illness and there are many ways that people have recovered.

 

[Mij]

A guided exercise program helped improve his symptoms. It's actually works the other way around with M.E.

 

[duncan]

I do not see stories such as this as uplifting.

I view them at best as exceptional, and not very relevant on the probability scale to me or to most of those who are sick with ME/CFS that I know.

At worst, I find such stories misleading precisely because they are not representative this community's experience. That doesn't mean I am not happy for Dan. It means newcomers - the newly diagnosed - may think this is a common or realistic outcome; researchers or reporters or neighbors or family members, may all come away thinking that exercise and yoga can fix what usually, they cannot. It means too many may read into this exceptional story a message that this can and well may happen to you or someone you love - even though the odds are against that being true.

By virtue of this story appearing where it does, exercise and yoga are at least partially validated as therapy. That by extension, this is a therapy that could apply to many, maybe even a majority of this population - even though that claim is not made in this article.

So, for me, this is not uplifting. To me it is undermining the ongoing efforts of so many very ill people to convey to the world outside of ME/CFS, the pernicious and unrelenting nature that characterizes the disease for most.

 

[lansbergen]

A guided exercise program helped improve his symptoms. It's actually works the other way around with M.E.

First improve enough and then try mild exercise.

 

[Wayne]

A guided exercise program helped improve his symptoms. It's actually works the other way around with M.E.

When I was at my worst and could hardly move, I was constantly evaluating whether to move, and how much. I was always trying to balance the negative implications of moving (exercise) and the negative consequences of severe deconditioning from not moving.

I feel I often "injured" myself by walking a block or two, but I feel I did manage to avoid the severe deconditoning. Was the self-inflicted injury worth it? I really don't know, even to this day. But I did finally manage to gradually improve my endurance to the point where I can now walk modest distances on most days.

It feels good to be able to do this, but I still struggle to find the proper balance that works best for me. I'm looking forward to perusing much of the information being shared by Dan with the hope that I can more accurately determine this proper balance.

 

[Mij]

@Wayne yes, finding the proper balance is certainly a challenge but we can't force ourselves. Steady incremental exercise (even when wearing a heart monitor as Dan did) does not lead us on the road to recovery.

I calculate everything I do and haven't experienced PEM for several months. Am I recovering? No.

 

[Hip]

Unfortunately, pacing, yoga and nutrition does not cure the pathology of PEM.

Well if you read the original Daily Mail yoga article, you'll find that the former ME/CFS patient is now running half marathons, so I think that would probably count as curing the pathology of PEM.



For those who are objecting to the validity of a yoga treatment of ME/CFS: would you say your motivation for this objection is scientific, or political?

Many ME/CFS patients on this forum, myself included, are of the opinion that graded exercise therapy (GET) is greatly overhyped, has dubious studies like the PACE study behind it, probably does not work for most patients, may well be harmful for some, and certainly should not be one of the main standard treatments offered by the NHS to ME/CFS patients.

In addition, GET/CBT are linked to the disability insurance industry lobbying that tries to cast ME/CFS as psychogenic disease so that insurance companies can avoid disability payouts to ME/CFS patients. All good reasons for taking a dim view of graded exercise therapy.

So it is perhaps understandable (but not excusable) that patients may be politically opposed to the idea that yoga, which some may construe as just another form of exercise, can be effective as a treatment for ME/CFS, even for just a small subset of patients.

However, politics is one thing, and truth is another. If it is true that these patients had ME/CFS and their disease was ameliorated or put into remission by yoga, would you want to suppress that fact just for political purposes?



Let's look at the possible scientific plausibility of this yoga treatment for ME/CFS:

• First of all, yoga is a bit more than just exercise: it is a method of cultivating the mind through the body. I used to do a lot of yoga before I developed ME/CFS, and I can vouch for the fact that it profoundly improves mental and cognitive functioning. And echoing what Dan Moricoli said in Cort's article: heavy-duty aerobics-type workout yogas (which are really a perversion of the original spiritual concept) do not have any affect on the mind at all, I found; whereas very lightweight, gentle and subtle yoga, which expends far less energy, does have profound spiritual and mental effects.

• Secondly, yoga can modulate the autonomic nervous system and vagus nerve, as this Google search will show. So given the autonomic dysfunction in ME/CFS, and given theories like Michael VanElzakker's, which postulate that a vagus nerve infection causes ME/CFS, it becomes less surprising perhaps that yoga may, in some subset of patients, have benefits. Yoga's ability to modulate the autonomic nervous system may be able to change to course of this disease for some.

• Thirdly, many yoga asanas (yoga poses) significantly exercise the spine (many yoga asanas rotationally twist and laterally bend the spine, thus giving a full workout for the spine), so one might speculate that this may facilitate better blood flow into the spine, which may then help to clear any inflammation and viral infections in the dorsal root ganglia. Several ME/CFS patient post-mortems have found inflammation in the dorsal root ganglia of the spine.

• Fourthly, this spinal exercise may also promote the flow of cerebrospinal fluid in the CNS, which may help clear out toxins from the brain. In this aspect, yoga might be similar to Perrin Twists, which are thought to clear toxins from the brain by promoting lymph fluid flow. Perrin's techniques have helped a few ME/CFS patients.



When my ME/CFS was at its worst though, I was far too weak physically to do more than one or two yoga asanas, so I can certainly appreciate that yoga will be impossible for many ME/CFS patients. However, that does not rule out the possibility that some patients may be able to do some yoga, and that out of those who can, some small subset might benefit from yoga.

Reading these stories about ME/CFS amelioration/recovery from yoga has made curious about trying it, because due I think to various medications I take, my ME/CFS has improved quite a bit over the last few years, so now I would be capable of doing some yoga.

 

[MeSci]

When I was at my worst and could hardly move, I was constantly evaluating whether to move, and how much. I was always trying to balance the negative implications of moving (exercise) and the negative consequences of severe deconditioning from not moving.

I feel I often "injured" myself by walking a block or two, but I feel I did manage to avoid the severe deconditoning. Was the self-inflicted injury worth it? I really don't know, even to this day. But I did finally manage to gradually improve my endurance to the point where I can now walk modest distances on most days.

It feels good to be able to do this, but I still struggle to find the proper balance that works best for me. I'm looking forward to perusing much of the information being shared by Dan with the hope that I can more accurately determine this proper balance.

I'm not convinced that deconditioning is a significant issue, even in the severely affected, and I'm certainly very doubtful that exercise can improve it when your body is telling you it needs to rest.

In my case, once I gave my body the rest, food and supplements to start to mend itself a bit, it told me that it wanted activity. I started feeling my muscles responding again, and they clearly wanted to be used, very briefly and gently and carefully at first. Even as I improved, I sometimes had to hold back on activity, because my body was clearly indicating that it needed to rest.

It took me a very long time to learn the signals telling me when to stop and when to go.

 

[Wayne]

Am I recovering? No.

I'm not either, and unfortunately, I have to say that for the most part I've given up on ever recovering. But I continue to look for tips that "may" improve the overall functionality and quality of my life. Many different things have been shown to help many pwCFS, though it seems 99.99%+ of these things do not lead to significant recovery. Perhaps this point is what some here are trying to get across.

 

[Cort]

All recovery stories are exceptional at this point.

Does that mean they should not be posted?

There is no representative recovery story. Aside from pacing there's little that's representative in ME/CFS. Vistide doesn't cure everyone but vistide recovery stories have lead others to use it and benefit. The same is true for Ampligen. It's true for every success story - and for every success story others have tried it and it has not worked out. That's the nature of the beast.

The alternative is having no recovery stories be presented. I can see the reasoning behind that. There's a logic to it. You have to give providing people information that could help them even if they didn't recover - that's the downside.

I don't think this affects the research at all though. Researchers don;'t apply for or get grants based on anecdotal evidence

I would be careful about overestimating the impact a patient-based Forum has. It's mostly in house sharing I think.

I do not see stories such as this as uplifting.

I view them at best as exceptional, and not very relevant on the probability scale to me or to most of those who are sick with ME/CFS that I know.

At worst, I find such stories misleading precisely because they are not representative this community's experience. That doesn't mean I am not happy for Dan. It means newcomers - the newly diagnosed - may think this is a common or realistic outcome; researchers or reporters or neighbors or family members, may all come away thinking that exercise and yoga can fix what usually, they cannot. It means too many may read into this exceptional story a message that this can and well may happen to you or someone you love - even though the odds are against that being true.

By virtue of this story appearing where it does, exercise and yoga are at least partially validated as therapy. That by extension, this is a therapy that could apply to many, maybe even a majority of this population - even though that claim is not made in this article.

So, for me, this is not uplifting. To me it is undermining the ongoing efforts of so many very ill people to convey to the world outside of ME/CFS, the pernicious and unrelenting nature that characterizes the disease for most.