Daily Mail - yoga cures myalgic encephalomyelitis

[lansbergen]

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..

I agree.

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

Yes give the body the chance to heal, listen to what it tells you and do not overdo.

 

[Mij]

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.

Oh dear, where are we going now? Exercise causes PEM. The Daily Mail is not the leader in medical and scientific journals.

 

[Hip]

@Mij
What are you trying to say? Please be more clear.

 

[Mij]

@Hip I don't put too much stock into stories coming out of the Daily Mail, particularly ones that claim M.E. is a self correcting illness. Yoga, healthy nutrition, pacing etc does not cure PEM. Some of us can avoid getting PEM by properly pacing/staying within our "energy envelope", but the pathology is still there.

To date there is no cure.

 

[Cort]

Donor driven -- yes, but there are many differences. 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.

As for yoga curing ME, I said my piece here

Thanks - Dan's story, however - as has been pointed out several times - was not about yoga curing ME/CFS.

 

[Hip]

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.

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?

 

[MeSci]

@Hip I don't put too much stock into stories coming out of the Daily Mail, particularly ones that claim M.E. is a self correcting illness. Yoga, healthy nutrition, pacing etc does not cure PEM. Some of us can avoid getting PEM by properly pacing/staying within our "energy envelope", but the pathology is still there.

To date there is no cure.

Some of us have achieved PEM-free periods through diet and supplements. I have done that, and I wasn't pacing very well as I was having to work.

Admittedly it didn't last, but at present I have very little PEM compared to what I used to have. I'm still not pacing brilliantly as I just have too many necessary activities - you know how it is.

 

[duncan]

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.

 

[cmt12]

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?

The mental aspect makes it so much more complex than this. There are some who believe that if they over exert themselves that they may die. That matters.

 

[Hip]

The mental aspect makes it so much more complex than this. There are some who believe that if they over exert themselves that they may die. That matters.

Well there's a very easy solution: those people with such beliefs can abstain from yoga. Nobody is forcing this upon anybody.

 

[Gingergrrl]

The mental aspect makes it so much more complex than this. There are some who believe that if they over exert themselves that they may die. That matters.

There are some in which ME/CFS has led to severe cardiac issues, POTS, severely low BP, angina, and shortness of breath and have been told by ME specialists and cardiologists if they overexert themselves that they could die.

There are some who cannot feed themselves or turn themselves over on bed. If I see another thread with yoga as the cure, I will literally scream. I have nothing against yoga but it is dangerous for someone in my situation and it is most certainly not a cure.

 

[alex3619]

Blogs are the new Fourth Estate

The internet now has the label of the Fifth Estate.

 

[Gingergrrl]

The internet now has the label of the Fifth Estate.

Sorry, what does that mean?!!

 

[Wayne]

...it is most certainly not a cure.

I'm honestly confused by statements like this. Has it ever been asserted, or even suggested that "anything" written about on this forum that has led to improvements for somebody has been touted as a cure for others? It seems to me we all know better than that, which is why--from my observations--it virtually never happens.

Perhaps my brain fog is just too thick today and I'm not following this discussion accurately. But it certainly has been confusing for me to read many of these responses that seem to stretch the meaning of Cort's interview and Dan's story way beyond what was ever intended.

 

[Gingergrrl]

The title of this thread is, "Daily Mail: yoga cures ME" and I have seen threads and stories like this repeatedly.

 

[alex3619]

Sorry, what does that mean?!!

http://en.wikipedia.org/wiki/Fourth_branch_of_government
Its about balance of power in government. The first three are defined by constitutions. The fourth estate includes the public and media. The internet has been called the fifth estate, though its really a version of the fourth estate. Yet the internet is unlike other communication and media. The fourth and fifth estate are not defined by constittion or law, and so are more about how we think about balance of power to counter government etc. So, I ask, where do megacorporations fit?

PS http://en.wikipedia.org/wiki/Fifth_Estate

 

[cmt12]

Well there's a very easy solution: those people with such beliefs can abstain from yoga. Nobody is forcing this upon anybody.

The point is if we are trying to better understand causation from correlation, it's not useful to have people try something then if there are varying results, just say some variation of 'everyone is different' and just stop the investigation there.

The 'everyone is affected differently' has some truth to it but is always used to not have to implicate the mental, to not have to bring in more variables which are more difficult to understand and frankly more emotionally difficult to consider.

What I'm saying is when the guy in the article says that pacing, yoga, and exercise are why he is feeling better that MAY be because those are the only variables that he is aware of that changed. But instead of focusing on just those aspects, how many people are seriously considering other variables? I realize it's easier to just say 'he probably never really had ME' and dismiss it.

My opinion is that the underlying cause for that man is completely unaffected and the reason why he is more active and feeling better are that mental variables and the way he reacts to his symptoms have slowly changed over time in ways he is completely unaware of. These changes that matter are subconscious and so if you tried to measure them by asking him, you would not get this feedback because he can only relay what he is consciously aware of (which is pacing, yoga, etc).

 

[Hip]

There are some who cannot feed themselves or turn themselves over on bed.

I have every sympathy for those who have a more serious level of ME/CFS, and would do anything I can to help. And I certainly appreciate that yoga will be an impossibility for many.

But does that mean because some ME/CFS patients are not physically capable of doing yoga, all patients should avoid it?

There are many drugs and supplement treatments which cause bad side effects in some ME/CFS patients, so that they cannot take them; but these patients would never suggest that others must avoid these treatments.

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.

Much of the discussion on this forum is about medications and remedies that can ameliorate ME/CFS symptoms. And in many cases these do significantly improve ME/CFS, and are definitely worth pursuing. And nobody denies this fact. So I am not sure where you get this idea that it is premature to discuss treatments.

If it had been a drug or supplement, like say Valcyte or oxymatrine, that had improved Dan's ME/CFS, then nobody would object. There are people on this forum that have got from a bedbound state to being fit enough to do some work, just by taking Valcyte. Nobody objects to such stories being posted on this forum.

For ME/CFS, Valcyte is politically correct; but yoga appears to be politically incorrect, at least for some patients.

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.

For me, I would think long and hard about suppressing the truth, just for political purposes.

Here is another story of an ME/CFS patient getting a full recovery from yoga:

Yoga for ME and Chronic Fatigue | Yoga Abode

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.

Some people spontaneously achieve full remission from ME/CFS, as this article details. Should that information be suppressed also, just for political purposes?

I am not unsympathetic to the political angle, and do see your political point. But for me personally, I like to see truth trumping politics. Yes I know that's not the way the rest of the world works, but there you go!

 

[redviper]

Stories like this just reinforce the need for established bio-markers, as there are clearly many different subsets of illness grouped in with CFS/ME. Speaking personally, I can tell you that yoga would not provide significant improvements for my disease, which would be considered a fairly serious version of CFS/ME.

I also give even less credibility to claims like this coming out of the UK, considering how many UK patients with mental health problems have been given the label of "CFS/ME" by a specific few clinics in that region.

 

[Forbin]

"Correlation does not imply causation" also applies to interventions.

People will naturally tend to attribute the improvements they experience to whatever they are doing at the moment. I have done this myself. This is not to say that people are experiencing a placebo effect. I tried many seemingly promising things that correlated to no positive effect what-so-ever. It just means that the illness takes a turn at a particular time and people attribute that change to whatever intervention they were then employing. Some interventions may indeed be effective, but some may merely be coincidental. Telling which from which is not really possible from anecdotal accounts (although I'm going to be skeptical of anyone who attributes their recovery to Yoda. )

Dr. Bell, among others, has noted for quite some time that a percentage of patients experience significant improvement within the first five years of onset. The reason is unknown. After five years, those percentages drop considerably, also for reasons unknown. I've seen some assert that those who improve in the initial five years don't "really" have ME, but I don't agree. There are currently too many unknowns about the disease to say anything definitive about its course and how variable it might be. Who would have guessed that a portion of the immune profile apparently "flips" at around three years?

Any way, I'm happy for anyone who improves and I totally understand their enthusiasm for getting the word out on what they sincerely believed helped them; but, without some kind of controlled study being employed, such claims are just interesting anecdotes. At some point, though, enough similar anecdotes do warrant investigation.