Daily Mail - yoga cures myalgic encephalomyelitis

[AndyPandy]

The ultimate supreme cure is obvious. NOT reading the Daily Mail can cure you of anything. There, I said it. Will they report that?

Is the Australian equivalent the Daily Telegraph? I always feel better when I don't read it

 

[lansbergen]

One of these things is not like the others ....

This one?

5) drinking water can generally quench thirst

 

[Undisclosed]

Definitely. Providing a statistical perspective on the successes and failures of a treatment is a good idea, and good information to have. This is not always done in articles (sometimes because the statistical information is not at hand).

In the case of yoga, this study cited earlier found some improvements in fatigue levels of the 15 ME/CFS patients in the yoga trial, and a couple of the patients noted pain relief, but nothing more than that. So for the average ME/CFS patient, that's what you might expect from yoga: reduced fatigue, but you are very unlikely to experience remission.

This study appears to be useless for many reasons and they don't even say what criteria they chose the subjects with. The first paragraph says it all:

Chronic fatigue syndrome (CFS) is a debilitating disease characterized by persistent fatigue that is not relieved by rest and by other nonspecific symptoms, all of which last for a minimum of six months 1]. The pathophysiological mechanisms underlying CFS are not yet fully understood. Currently, patients with CFS are treated with antidepressants, cognitive behavioral therapy (CBT), and/or graded exercise therapy (GET) 2]–5]. However, there are patients who do not fully recover even with these treatments.

The authors appear to believe that anti-depressants, CBT, and GET are 'conventional' treatments for CFS so I guess it wouldn't be a difficult leap for them to think that yoga could be a possible treatment. It is not surprising though as the study is published in the journal of:

BioPsychoSocial Medicine is the official journal of the Japanese Society of Psychosomatic Medicine, and publishes research on psychosomatic disorders and diseases that are characterized by objective organic changes and/or functional changes that could be induced, progressed, aggravated, or exacerbated by psychological, social, and/or behavioral factors and their associated psychosomatic treatments

.

All I see from this study other than it's totally crappy design is that people with mild fatigue appear to subjectively feel a little bit better after engaging in Yoga.

Newspaper articles like the one we are discussing here do nothing but give the public who generally know nothing about ME the idea that things like yoga, eating a nutritious diet, leaving a bad relationship help us recover. I have absolutely no problem with trying different things to improve symptoms but the cure/recovery stories do nothing but give people an erroneous and damaging picture of what ME acutally is. We need good research and press stories that reflect what ME actually is. Supporting fluff stories in tabloids and crappy research design will get us nowhere.

 

[Hip]

This study appears to be useless for many reasons and they don't even say what criteria they chose the subjects with.

Agreed that omitting to state the criteria they used to select their patients is a shortcoming.

Though this study does at least use a control group, and found that the control group did not experience a reduction in fatigue.

Also, in spite of the fact that this Japanese study's authors were from a University's "Department of Psychosomatic Medicine" (and from a Medical School's "Department of Pediatrics and Child Health") they do not seem to be using a psychosomatic model to explain their results. Rather they talk about the effect of yoga on hormones, inflammatory cytokines, heart rate variability and the autonomic nervous system. To quote:

Yoga has been reported to reduce serum levels of cortisol [24] and proinflammatory cytokines such as interleukin-6 [25,26]. It also increases heart rate variability and shifts the autonomic nervous system from a state predominated by sympathetic activity to one predominated by parasympathetic activity [27,28]. All of these changes may contribute to the beneficial effects of isometric yoga, one of which is reduced fatigue.

However, the mechanisms behind the beneficial effects of this isometric yoga program are not fully understood yet. Therefore, these will be the focus of a future study. We have already investigated the changes in autonomic functions and in the blood levels of several biomarkers, the results of which will be published soon.

Note however that I did not cite that study in order to show how amazing yoga is for ME/CFS; quite the reverse; I cited it as evidence that the benefits of yoga for the average ME/CFS patient are only mild.

The authors appear to believe that anti-depressants, CBT, and GET are 'conventional' treatments for CFS so I guess it wouldn't be a difficult leap for them to think that yoga could be a possible treatment.

Well in the UK that CBT/GET are conventional treatments for ME/CFS (unfortunately). Possibly that's also the case in Japan.

I don't think yoga should be seen as similar to exercise though. In my experience, there is a big difference between yoga and exercise, as I found out when I used yoga as a very effective treatment for my severe IBS-D.

Prior developing ME/CFS, I had severe IBS-D, such that for years I never passed any solids at all, only very watery liquid (sorry to be graphic). I did a lot of regular exercise in those days, but this did not help my IBS-D at all. However, on days that I did yoga, this would dramatically improve my IBS-D, and my entire digestion would turn from pure liquid back to normal solid. These benefits would last a for a couple of days maximum after my yoga session, before reverting back to the severe IBS-D a few days later.

Newspaper articles like the one we are discussing here do nothing but give the public who generally know nothing about ME the idea that things like yoga, eating a nutritious diet, leaving a bad relationship help us recover. I

It would definitely be better if journalists made it clear that these recovery stories are rarities, and that for the majority of ME/CFS patients, yoga will not lead to remission.

The media have a lot to learn when it comes to providing a balanced picture scientifically.

 

[Hip]

Actually, if you look at the 20 minute "isometric yoga" program used in that study, @Kina, it is actually very low impact. For a start, the patients remain seated all the time, making things very easy. Then the poses are held statically, without any movement of the limbs (hence the isometric), so minimize exertion. And the 6 yoga poses used in the study themselves are incredibly low impact: far, far easier that the yoga poses I use.

You can see a picture of the 6 yoga poses employed in the study here.

Note however that the key to yoga is not just pulling the poses; it's also very important how you focus your mind onto the sensations occurring within your limbs while you are doing the poses. In my experience of doing yoga, if you don't focus your mind on your body and on your limbs, you don't release the tensions in your mind and body, and so probably will not lower your sympathetic activation.

In a way, I think yoga is similar to the Alexander Technique, in which the very act of focusing your conscious awareness on tense muscle eventually causes the tension in that muscle to dissipate. The main problem I find with doing yoga these days, though, is that I cannot muster enough conscious awareness to focus on my limbs, due to the brain fog. And if you do yoga mindlessly, I don't think it works very well.


My guess though is that the benefits obtained from this yoga will in most patients be slight, and so these small benefits may not be worth the trouble.

 

[alex3619]

Then the poses are held statically, without any movement of the limbs (hence the isometric), so minimize exertion.

I am not sure this correct. Static poses require energy to maintain. Indeed nearly all my muscle issues arose from static muscle tension.

 

[Hip]

I am not sure this correct. Static poses require energy to maintain. Indeed nearly all my muscle issues arose from static muscle tension.

Yes even static poses require energy and exertion, and sometimes quite a surprising amount.

A few years ago, when my ME/CFS was worse, even doing a single yoga pose was about my limit. Now I can do around 10 or 20 minutes of easy yoga without too much difficultly.

Though the ½ mile jog that I now occasionally do I find in some ways less exerting than the yoga. Which perhaps reaffirms what you are saying.

What I think makes yoga more strenuous is when there is a lot of inherent muscle tension, ie, if your overall muscle tone is high and tense, then you perhaps may have a harder time holding the poses.


In fact, one of the things I am in the process of trying at the moment is taking muscle relaxant drugs just before doing yoga. I have a hunch that pre-relaxing the muscles in this way might make the yoga a lot less strenuous. I bought three muscle relaxant drugs to try: methocarbamol, metaxalone and cyclobenzaprine.

I tried the first drug methocarbamol already, but at the one-off single dose used (1000 mg), it did not seem to relax my tense muscles at all. It may be that I have to take this drug for a few days in order to get the muscles to relax. I don't know. I don't have any prior experience with muscle relaxants.

 

[Cort]

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

Tell that to Dr. Klimas

 

[Cort]

Cort, advocacy is a funny thing, particularly when we are speaking to contested or controversial disorders. Lots of variables involved, lots of perspectives. But certainly one of the things on the top of the collective community's list - one of the very first things that has to be achieved - is to convince the world at large of the legitimacy and the gravity and the cruel debilities associated with this contested disease. I think it premature to be talking cures or mitigating tinctures or blue crystals or yoga or whatever, until that goal has unequivocally been realized. And I certainly would think long and hard about promoting a feel good story that incorporates a "cure" (that might be harmful to some sick with this disease), before that singular objective has been reached.

Although we have been trying for quite some time, many for decades, we are not there yet. Not by a long shot.

So these attempts at showcasing tales of success, that not only may not be representative of what the majority afflicted encounter, but may actually be harmful for some, even if it's only for a handful, seems to me counterproductive. That is just my opinion.

Finally, I would be careful of underestimating the impact of a blog. This is the Internet Age, and for many of its denizens, Blogs are the new Fourth Estate.

Hip, my point is we may be sending the wrong message to some of the wrong people, perhaps many with influence both professional and personal, with kumbaya tunes and nursery rhymes. This is a serious disease that is not treated seriously, and that needs to change.

Duncan I understand your concern but I have to tell you that I have never seen on of my blogs end up on a media outlet. I never even seen one referred to. The NIH does not fund studies based on anecdotal reports. For one thing you have to have some data first.

A blog like this is not going to affect funding at all - but it's very possible that it may be helpful for some. I wouldn't overthink it...These are basically in-house conversations.....

 

[Cort]

"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." - Hip

This is exactly right. In order to get funded from the NIH - you need to have substantial evidence in advance. Anecdotal stories like this carry no weight at all and they shoudn't - Imagine asking for a several million study based on I know somebody who got better doing X...They would be laughed out of the building.

 

[Mij]

Tell that to Dr. Klimas

I am a little confused with the exercise video she has out (featuring Dan and another women), but I'm not her patient and don't know what other treatments her subjects were given to go from slurring words etc to power walking quite briskly and exercising wearing heart monitors etc. The video is confusing to me.

Personally, when I was at my worst I would never had attempted to exercise even with a heart monitor. It would have been impossible. I slowly started to improve over many years and now can go out power walking twice a week if I manage my energy wisely- sans heart monitor.

 

[Mya Symons]

"This is exactly right. In order to get funded from the NIH - you need to have substantial evidence in advance. Anecdotal stories like this carry no weight at all and they shoudn't - Imagine asking for a several million study based on I know somebody who got better doing X...They would be laughed out of the building."

I could be wrong, but didn't they spend tax payer dollars on Graded Exercise Therapy studies? I don't know if it was millions or thousands. Since money was spent on GET, who knows, maybe someone will be spending tax payer dollars on Yoga and ME or FMS studies? Hopefully not!

 

[Snowdrop]

"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." - Hip

Anecdotal stories of recovery due to various exercise therapies may carry not weight at all for science researchers. The problem is that while there are presently people quite ill with no hope of recovery through these strategies the 'anecdotes' amount to misinformation because they are generally unclear and imprecise. Newspaper reports of this type over and over again reinforce mistaken perceptions of ME and the general public doesn't 'dig deeper' or try to verify what's said. And in fact many Dr's use this as an excuse to abuse patients they don't know what to do with. It is the present harm to vulnerable people that is at issue.

I am a little confused with the exercise video she has out (featuring Dan and another women), but I'm not her patient and don't know what other treatments her subjects were given to go from slurring words etc to power walking quite briskly and exercising wearing heart monitors etc. The video is confusing to me.

Exactly, it's disingenuous. Surely there were a variety of other treatments that preceded the ability to do yoga sustainably.

 

[Snow Leopard]

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.

It is one thing to say: 'Here is the set of things I did, I recovered, any/all/none of things could have helped, decide for yourself'. Versus 'yoga/diet/exercise/whatever is what cured me and if you are not willing to try it, then you don't want to get better'. The latter is what is published in tabloids like the Daily Mail.