Daily Mail - yoga cures myalgic encephalomyelitis

[Cort]

You may be right that the benefits from yoga may only apply to a small subset of ME/CFS patients; however, we probably don't have enough information at present to make such assertions with any certainly: how many ME/CFS patients have actually tried yoga for several months to see if it helps? There are many ME/CFS patients who are fit and capable enough of doing say 15 minutes of very light and gentle yoga a day. But how many of these actually give it a go?

I never have and I've never tried rigorous pacing either - let alone heart rate based exercise - which includes, by the way, checking your heart rate at the beginning of each day to determine whether you did too much the past day...That seems like quite a good test.

 

[Cort]

@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.

Everything is fine with your statement Mij in my opinion except for the "us" in "does not lead us on the road to recovery". All you can really say is that it did not work for you. I imagine that it would not work for a lot of people but it did work for Dan and he knows of some other people for whom its worked. For me, I think it simply gives some peoples bodies enough time to recover from whatever hit they took. Gentle nudges start working. That it could happen to Dan with his very severe case of ME/CFS is amazing - that's why I called it a "remarkable story"...It's pretty shocking really. .

 

[Gingergrrl]

For me none of this has anything to do with political correctness which is something that I have never cared about. I hold no loyalty to either political party and am an independent voter and the same goes for PR.

Cmt12 stated that some people do not do activity b/c they believe it can kill them (which sounded to me like the whole BPS fear of exercise crowd.). I was merely stating that there are people whose ME is at a level that doing exercise CAN kill them. And most of these people (myself included) would LOVE to exercise or do yoga.

We are not opposed to it and not telling others not to do it. We are opposed to claiming that it is a cure for a hardcore medical disease. I've argued this issue before and don't know why I am doing it again b/c my arm is killing me and my illness is at an all time low but this stuff just really pisses me off.

 

[Hip]

At some point, though, enough similar anecdotes do warrant investigation.

What I was thinking was that some of the more physically able (and enthusiastic) patients on this forum might like to give yoga a go. That way we can get more info on its potential benefits, and any pitfalls. And get a better sense of how many patients it may help.

My very speculative hypothesis (see this earlier post) is that yoga may offer benefits for ME/CFS via yogas ability to flex the spine, which may increase spinal blood flow and cerebrospinal fluid flow. If this hypothesis is true, it would suggest that ME/CFS patients could cut out many yoga asanas that do not involve the spine, and just focus solely on small subset of say just 6 or 7 easy yoga asanas that nicely flex the spine.

That way you might maximize the benefits of yoga, and minimize amount of exercise and exertion involved. 6 or 7 yoga ananas, even if done at a nice slow and relaxed pace, with lots of resting in between the asanas, would only I think take around 10 or 15 minutes in total. That should be possible for many patients.

I am bit tired today, but just to give an example of some easy beginner's yoga ananas (yoga poses) that nicely flex and rotate the spine, the following 7 might be a good choice:

• Upward facing dog
• Hare pose
• Cat pose
• Triangle pose (left and right versions)
• Easy plow pose
• Left twist with left leg bent (and right version)
• Rotational pose (left and right versions)

These yoga asanas can be seen on this very clear yoga website, which also provides a short video illustrating each pose.

I would stress that it's not about expending energy, so these yoga poses can be done in a very gentle way. However, I might be advisable that only ME/CFS patients who can do these yoga poses within their energy envelope consider attempting them.

 

[duncan]

Hip, I was disheartened to read your observations to me.

Discussing the efficacy of treatments on a forum, a forum like this where there exists the give and take of two-way discussions, is a very different beast than deliberately crafting and spotlighting a blog - which really is like a news story in that it is a one-way street. Moreover, the blog in question seems to have at best a dubious relevance to the general ME/CFS community. I hope I am wrong, but I fear it may in fact contribute to long-standing stereotypes. And in the end it may simply prove to be a pleasant story that does little to change a dangerous and grotesque misconception: That a bit of positive thinking and a go-get-em attitude, with a healthy dash of getting up off our asses to exercise just a tad, might fix everything for ME/CFSers.

Similar tales teeter dangerously on pandering to the myth that ME/CFS isn't really all that terrible. Why would anyone endorse such a move when we still have a chasm of disbelief and disdain and ignorance yet to bridge, a chasm about a) the bleak nature of our disease, b) the appalling lack of effective treatments for a majority of patients c) the high rate of suicide among our members reflective of the sense of hopelessness and futility and despair of ever getting the disease even acknowledged, let alone remedied.

Yet you suggest my concern about such stories is suppressing the truth? For political purposes??

It is hardly suppressing the truth to suggest such stories could act to undermine the efforts of others still - for how many decades now? - trying to convey the grim characteristics that qualify this disease.

If anything, there is an argument that says it is stories such as this that feed disinformation and a sense of complacency in the healthy population (including our peers in the work force, and clinicians, and family members). Or fails in describing the sad reality that there is a paucity of effective treatments - or even research into them - available today for our fellow patients. How? By painting a pretty picture full of vibrant colors, when the reality is stark, and cast in black and white, broken up only with grades of chiaroscuro.

This is not politics. It's common sense. We need to first convince the world of the grotesque nature of our plight. Promoting pretty stories may be the ultimate suppression of truth - a truth which happens to be ugly and unpleasant.

 

[lansbergen]

Promoting pretty stories is the ultimate suppression of truth - a truth which happens to be ugly and unpleasant.

Indeed.

 

[lansbergen]

• Upward facing dog
• Hare pose
• Cat pose
• Triangle pose (left and right versions)
• Easy plow pose
• Left twist with left leg bent (and right version)
• Rotational pose (left and right versions)

These yoga asanas can be seen on this very clear yoga website, which also provides a short video illustrating each pose.

I would stress that it's not about expending energy, so these yoga poses can be done in a very gentle way.

Who thinks I could have done that is very much mistaken.

 

[Hip]

Hip, I was disheartened to read your observations to me.

Duncan, my comments were not really directed at you personally, and certainly no offense was intended; rather these comments were to anyone here who feels that such recovery / amelioration stories, even if true, should be suppressed for political purposes, for "the greater good".

I have had this discussion before, and my view is that I don't think such stories, even in national newspapers, damage the cause of ME/CFS. The people who count in advancing the field of ME/CFS are the scientists, and I would have thought that these are not people who are going to be influenced by such rare occurrences as an ME/CFS remission from yoga, from changing diet, or suchlike. Scientists think in terms of statistical weight of evidence, and the occasional story here and there of remission is not going to carry much weight in the scientific mind.

Likewise, sometimes you hear in the newspapers that people get a miraculous a spontaneous remission from an incurable cancer. Such stories do not suddenly make people think that cancer is a trivial disease that is easy to overcome.



But I totally agree for the need for better awareness of the grotesque nature of our plight. I often try to come with ideas about how to better do this, but as yet I have not had any good brainwaves. We are not in any disagreement about our ultimate cause, we just differ in this small matter of recovery stories.

One target that I would like to bring to book though is the whole field of somatoform disorders. These to me are not scientific, yet they provide the pseudo-intellectual backbone for psychiatrists to then say that ME/CFS is psychogenic. If we can pull out these somatoform roots from the soil, the whole weed of psychogenic theories of ME/CFS should wither and die.

 

[Wayne]

The title of this thread is, "Daily Mail: yoga cures ME"

That's the title of this thread, but it is "not" the title of the article in the Daily Mail. I did a search for the word cure on that article, and came up with just one hit. Here's a quote by the woman who was doing the yoga:

"There is no cure or treatment, so I decided to seek alternatives."

So, the paper doesn't claim it's a cure, the practitioner doesn't claim it's a cure, yet the word cure somehow managed to get into the title of this thread. Why is that? In reviewing the initial post on this thread, it seems there was an attempt to be disdainful of the article and the practitioner, and the use of the volatile word "cure" appears to have been deliberately used and perhaps calculated to have a certain effect.

This thread then progressed to some PR members becoming disdainful of Cort's article and Dan's improvement regimen which incorporated many things, including yoga--but NEVER made claims to it being being a cure. -- I just don't get the indignation, but it's getting to be too much for me, so I'm taking leave of this thread. It seems anytime a story comes out where somebody's reported some improvements, there's a very good probability they'll come under fire for it. It's happened over and over again, unless as Hip pointed out, it resulted from a more politically accepted drug or modality.

If I were ever so fortunate to experience significant improvement, this thread is just one more reminder that it'll be best to keep it to myself, and share it only with a few trusted PR members via PM. No reason to open myself up to a lot of criticism, and no reason to aggravate so many people who don't like to hear such stories.

 

[AndyPandy]

@Wayne I for one would be happy to hear about any significant improvement you might experience. I like to assess each recovery story for myself and draw my own conclusions.

Who knows what might help? We are all so very different. I am open to respectfully hearing about all manner of success stories.

Best wishes.

 

[alex3619]

Lemons. I have my lemon rule for a reason. Most treatments are lemons, but there is no way to find out which is which till you suck it and see.

I have not tried yoga. I have tried Tai Chi, Quigong, Chinese herbal medicine, and so on, though mostly in the 80s. The Quigong was, I think, early 90s.

Many of us are on a search. Many supposed treatments don't help most. Yet many help some.

The tone of message in the media is an issue though. I do not agree it does not matter. I do not agree its only about the scientists. The science is about the research, about leading to a cure. The media tone is about the disbelief, the ignorance, the prejudice and stereotypes. Its in that mix of ignorance that simple but irrational claims like some of the biopsychosocial claims can gain influence. This then flows into politics.

 

[lansbergen]

The tone of message in the media is an issue though. I do not agree it does not matter. I do not agree its only about the scientists. The science is about the research, about leading to a cure. The media tone is about the disbelief, the ignorance, the prejudice and stereotypes. Its in that mix of ignorance that simple but irrational claims like some of the biopsychosocial claims can influence. This then flows into politics.

Yep

 

[IreneF]

One issue that I rarely see addressed is the assumption that none of us were healthy, well-nourished, physically fit specimens before we got sick. If yoga, diet, and clean living are supposed to help us now, why didn't they prevent the disease in the first place?

 

[lansbergen]

One issue that I rarely see addressed is the assumption that none of us were healthy, well-nourished, physically fit specimens before we got sick. If yoga, diet, and clean living are supposed to help us now, why didn't they prevent the disease in the first place?

Yes why not?

 

[Hip]

The media tone is about the disbelief, the ignorance, the prejudice and stereotypes.

My personal view is that on a damage scale of 1 to 10, newspaper articles in which "scientists" like Simon Wessely put forward their view that ME/CFS is psychogenic would score 10 out 10 for damage. Obviously the public listen scientific opinion on medical matters, and since Simon Wessely on paper sounds like he is a reputable scientist, his view will carry a lot of weight in the media, both among doctors and the general public.

Similarly, studies like the PACE trial, which used the dirty trick of redefining the word "recovery" just so that they could say that GET/CBT led to recovery, get a 10 out of 10 for damage.

Whereas media articles that report single anecdotal stories of ME/CFS recoveries or amelioration from dietary changes or yoga get a 1 out 10 score for damage, if that.

Stuff that is in-between might be things like the Lightening Process, which I might give a 4 out 10. The Lightening Process hints that ME/CFS is an "all in the mind" condition which is damaging, but because it is not a scientifically validated therapy, it does not carry the same weight as something like PACE.

 

[Hip]

One issue that I rarely see addressed is the assumption that none of us were healthy, well-nourished, physically fit specimens before we got sick. If yoga, diet, and clean living are supposed to help us now, why didn't they prevent the disease in the first place?

How can you be sure that they didn't?

Case in point: many acquaintances of mine caught the same virus that triggered my ME/CFS. In these people, this chronic viral infection often caused some permanent physical symptoms such as a mild chronic sore throat and post-nasal drip, as well as what I observed to be "ME/CFS-lite" symptoms several people.

However, for some reason, two of my friends who caught my virus at the same time as me inexplicably (and probably intuitively) changed their diet to become strict vegetarians. These were the last people you would expect to turn vegetarian, but both soon after catching the virus stopped eating meat. Neither developed ME/CFS, although I observe that they do still have "ME/CFS-lite," like many of the others who caught my virus.

So might their switch to vegetarianism have prevented them developing full ME/CFS? We will never know, but I have been tempted to try vegetarianism myself. (I have actually followed vegetarian raw food, salad-type diet for around 2 months, and saw mild improvements, but not enough to encourage me to continue further with the diet).

 

[lansbergen]

i

So might their switch to vegetarianism have prevented them developing full ME/CFS? .

I still eat meat and that did not prevent I have improved a lot.

 

[Ecoclimber]

@Cort

It undermines the creditability that ME/CFS is a serious biological/organic disease. It undermines the creditability of ME/CFS researchers and their quest for research funding into the biological/organic causes of ME/CFS. It undermines the work of all the patient advocates.

It gives aid, comfort and credence to our adversaries, the psychobabblist.

It is at best anecdotal of one person that claims he recovered from ME/CFS without any biomarkers to prove his case and peddles his material for a fee, online for medical research into what, more Yoga research for ME/CFS?
Definition of recover: To cause to be restored to a normal or usual condition.

It is deceptive by the fact that it gives a false illusion that Yoga is a recovery option for ME/CFS patients as stated in the original thread article. There are no and I repeat no clinical trials that support the testimony of one person and whatever method he used so he can feed off the hopes of the seriously afflicted.

How do you think this is going to help Bob Miller get Ampligen when all ME/CFS patients need is a slight variation of Yoga? I can see franchise Yoga centers being set up across America in the same fashion as the Fatigue and Fibromyalgia Centers. He does have a marketing and business background.

There is big money to be made off the backs of desperation in chronically ill patients. This can be observed in all serious disease categories such as claims for cancer cure, autism, etc. As these charlatans laugh all the way to the bank while the hope of a patients’ lives are snuffed out.

And to say you are going to come out with another and better story on Yoga smacks the face of suffering ME/CFS patients causing additional discord and fragmentation within the ME/CFS patient community.

As far as I know, you would be hard pressed to determine how yoga kills viral/fungi/bacterial pathogens under a microscope in the lab. Perhaps, trotting over to Laura Hillenbrands and tell her how Ommm and Yoga, can get her back on her feet as stated in the title of this thread.


Also, some Christians might find Yoga offensive, the hidden spiritual meaning of Yoga:
http://www.letusreason.org/NAM1.htm

 

[Hip]

It gives aid, comfort and credence to our adversaries, the psychobabblist.

Can you explain how you think that can be? Wessely's psychogenic theories of ME/CFS state that ME/CFS is maintained by a belief that we are ill; in other words, that our illness is caused by the particular thoughts we have in our heads.

Yoga on the other hand is a physical therapy that is applied to body. How does this relate to psychogenesis? I don't see any connection between yoga and psychogenic theories of ME/CFS.

It is deceptive by the fact that it gives a false illusion that Yoga is a recovery option for ME/CFS patients as stated in the original thread article. There are no and I repeat no clinical trials that support the testimony of one person and whatever method he used so he can feed off the hopes of the seriously afflicted.

You make sound like there is some dire vampire predatory action going on here: "so he can feed off the hopes of the seriously afflicted".

And to say you are going to come out with another and better story on Yoga smacks the face of suffering ME/CFS patients causing additional discord and fragmentation within the ME/CFS patient community.

There's always been discord and fragmentation in the ME/CFS community for as long as I have been reading ME/CFS forums.

Also, some Christians might find Yoga offensive, the hidden spiritual meaning of Yoga:
http://www.letusreason.org/NAM1.htm

Now I have heard it all.

 

[Mij]

Neither developed ME/CFS, although I observe that they do still have "ME/CFS-lite," like many of the others who caught my virus.

They never developed ME/CFS but they still have "ME/CFS lite"???