Daily Mail - yoga cures myalgic encephalomyelitis

[Hip]

Some studies showing the benefits of yoga for ME/CFS, fatigue and fibromyalgia:

Isometric yoga improves the fatigue and pain of patients with chronic fatigue syndrome who are resistant to conventional therapy: a randomized, controlled trial

Prospective observational study of treatments for unexplained chronic fatigue

A pilot randomized controlled trial of the Yoga of Awareness program in the management of fibromyalgia

Follow-up of yoga of awareness for fibromyalgia: results at 3 months and replication in the wait-list group

Effects of yoga and the addition of Tui Na in patients with fibromyalgia

An eight-week yoga intervention is associated with improvements in pain, psychological functioning and mindfulness, and changes in cortisol levels in women with fibromyalgia

Efficacy and safety of meditative movement therapies in fibromyalgia syndrome: a systematic review and meta-analysis of randomized controlled trials

 

[Ecoclimber]

We are talking about recovery from ME/CFS. If you can recover from ME/CFS then it's eitology is not organic or bioglogically based and plays into the politics of the psychobabblist crowd.

What is the title of this thread?

Daily Mail - yoga cures myalgic encephalomyelitis. Does it @Hip?

If that is the case, than ME is a psychiatric or psychsomatic-disorder not biologically based. Otherwise, you would also draw the conclusion that Yoga can cure cancer.

We are talking ME not Fibro or GWI in which psychotropic drugs, Hindu based TM meditation..Ommm, Hindu based Yoga, CBT, and GET are the only treatment options. Thirty years down the drain trying to convince the public, researchers and the medical profession that ME/CFS is a biological/organic disorder. I give up. Let's allow Dr.Oz conduct ME/CFS research.

 

[Hip]

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

Do you really find it hard to understand that some people can display very mild versions of ME/CFS symptoms after catching a virus that caused full ME/CFS in others?

 

[Mij]

@Hip you wrote, "neither developed ME/CFS" but still have "ME/CFS lite". You need to explain this statement.

People don't "catch" M.E, it's a little more complex than that.

 

[Hip]

@Hip you wrote, "neither developed ME/CFS" but still have "ME/CFS lite". You need to explain this statement.

Ah, so in fact you just didn't understand what I wrote. The suffix -lite is sometimes used to denote a very mild version of something. So by ME/CFS-lite, I mean a condition displaying very mild ME/CFS symptoms. Does that make it clear?


I saw how the same virus that I caught often produced very mild ME/CFS symptoms in many other people. These very mild symptoms included some very classic ME/CFS symptoms such as sound and light sensitivity, anomia (problems recalling words or names), forgetfulness, lots more fatigue, and chronic sore throats.

Dr Chia diagnosed my virus as an enterovirus, and it seems to me that the propensity of enteroviruses to cause ME/CFS-type symptoms may be there for everybody; but in certain patients like myself, you get full blown ME/CFS, whereas in others just very mild versions of some of the same symptoms manifest.

 

[Hip]

If you can recover from ME/CFS then it's eitology is not organic or bioglogically based .

Where did you get that idea?

If you were to apply that to other diseases, then it would mean that any disease you can recover from is not biological or organic. So by implication, you are saying that any cancer that is curable is not biological.

Obviously there is a flaw in the logic here.

 

[Gingergrrl]

@Hip Did you see Dr. Chia in person and do a stomach biopsy and the ARUP panel? I am confused how such a large group of people that you knew in the UK were all diagnosed by Dr. Chia? I am not doubting you if you say it happened but I am confused like Mij by many statements that you are making.

 

[Hip]

@Hip Did you see Dr. Chia in person and do a stomach biopsy and the ARUP panel? I am confused how such a large group of people that you knew in the UK were all diagnosed by Dr. Chia? I am not doubting you if you say it happened but I am confused like Mij by many statements that you are making.

Perhaps a more important question to ask is "How do you know it was the same virus that hit your friends and family, since often the same virus can manifest different symptoms in different people?"

The answer is that the virus produced some tell-tale physical symptoms that allowed me work out when someone had caught it.


I have not seen Chia in person, nor have I had the enterovirus tests, which I find a bit too expensive.

However, because this virus severely affected me (it not only caused me to get ME/CFS, but also triggered severe anxiety, anhedonia and some mild psychosis), and because it severely affected others physically (4 people got myocarditis-driven heart attacks from the virus, and one of them died) as well as mentally (a few people developed severe anxiety and/or anhedonia from the virus, and nearly everyone manifested some sort of mild but permanent mental symptoms, sadly including some children), I decided to set up a website precisely describing its symptoms (my website is here).

Dr Chia then read my website in its entirely (he really likes fully examining patient histories), which was very kind of him because I was not even a patient of his. Chia then told me that the symptoms I listed in detail on the site could only be caused by an enterovirus. At the time my knowledge of viruses was poor, so it was very, very appreciated to have his expert opinion.

The reason I set up the website was because I was very concerned that this virus, which had affected so many of my friends and family, might spread across the human population, and cause lots of misery. It probably is.

 

[redviper]

@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 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.

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

This is hands down one of the best posts I've seen on a CFS/ME forum. Well thought out and 100% correct.

 

[SOC]

I will be SO glad when we have a biomarker and will be able to separate people with CFS-like illnesses from the real thing. Then we'll be better able to judge whether yoga/diet/stress-relief/GET cure stories actually apply to PWME or are only useful for people with illnesses that superficially look like ME/CFS.

In the meantime, we simply can't know. People with these miracle cure stories may actually have the illness and these therapies worked for them (if not the rest of us who have tried them). Or they could have something else more amenable to such treatments.

There's probably not much value in arguing about these cures until we can clearly distinguish PWME from non-PWME. However, I will continue to fight any suggestion that such cures apply to all, or even most, PWME. Many PWME have tried yoga/diet/GET and so on without any miraculous cure. These stories are clearly rarities and should be presented as such.

 

[beaker]

{snip}
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.

[snip]

.

It may not damage the cause, it may very much damage the individual. Apparently you have not been bed ridden and had a family member snip such an article out of the paper/ print off the net and throw it in your face.
My heart hurt reading that story.
I thought, oh shit. here we go again.
I used to read such stories in the The CFIDS Chronicle -- "I climbed a mountain and was cured." "I moved to an island and lived on island time and was cured "( one of my favorites) my PWME friends and I used to laugh at them.
They were so ridiculous to our experience of the illness. And you either laugh or cry.
But 2 of those friends are now dead.
We all had and those of us remaining have lack of support and cruelty and mockery from family members.
And I don't feel like laughing anymore. I'm worn out by it all. No one , even in the community seems to really get it.
Putting the story in the blog is not uplifting or hopeful to me. It is ammunition to those who seek to live in denial regarding the serious nature of a family member or friend's illness.

I'm happy that someone is better. But their is no proof as to what got them there. There have always been stages sketched out by the specialists. It has always been known that this illness can wax and wane in some. Remission can even come in form of years and then it comes back for reasons unknown.
And this person is not "recovered***" . They are at 80% of pre illness. That's good. Thats a great improvement. A semi remission even.
And great that his illness level allowed them to do those things.( Hey he could take some steps before he reached his VO2 Max. Has me and way too many others beat)
But to headline Heart-rate GET( or whatever you called it I no longer remember) as "recovered**" is crap.


Forgive my anger. I know everyone is sick. It's been a hard winter.

**ED: rechecked article on cort's blog. word "cure" was not used. implied but not used. I want to correct the above to "recovered"

 

[Wayne]

I will continue to fight any suggestion that such cures apply to all, or even most, PWME.

SOC, I would be most interested to hear any specific words or quotes that have ever been made where somebody on this board claims to have been "cured" using yoga, or any other kind of treatment. I would also be interested to hear any suggestions being made that any these so-called "cures" applies to all or even most pwME. -- Quite honestly, I'm completely baffled by this continuing insistence that claims of cures are being made.

 

[Ecoclimber]

Where did you get that idea?
If you were to apply that to other diseases, then it would mean that any disease you can recover from is not biological or organic. So by implication, you are saying that any cancer that is curable is not biological.
Obviously there is a flaw in the logic here.

You took it out of context. I was responding to the info in your post #146



@Wayne
Look at the title of this thread Yoga cures ME/CFS. Yea, I have a big objection to that. Yea, huge discord on his blog. Have you read the comments and the comments on here. Did you even read the blog story. The blog story states recovery. I have never observed Yoga with the ability to kill off virus/fungi/bacteria pathogens under a microscope. If people are cured and recovered, where are the blinded trials and the biological/medical mechanism explaining it?

Hundreds of patient advocates, myself included, have just spent the last 3 years fighting the IOM and P2P contract so that this disease for the first time would be considered a debilitating biological/organic disease that needed to be taken serious by the medical profession. Most advocates have risked their own health to accomplish goal and have tirelessly worked many long,hard and difficult hours to get our message acoss.

We do not want to see our efforts undone at this critical juncture in time by claims from one person who said he recovered from Yoga especially when the CDC toolkit has not been disclosed. There's a war now on this thread and on his blog. Patients are upset.

 

[brenda]

I wonder who wants us to believe that our own immune systems cannot recover function enough to wipe out the infections that are keeping us low and can do so without the intervention of money making anti-virrals? No prizes for guessing lol

Yoga along with many other natural modalities espeicially diet, have been found to enable it. Who does not like to hear this? Follow the money trail.

 

[lansbergen]

Dr Chia diagnosed my virus as an enterovirus, and it seems to me that the propensity of enteroviruses to cause ME/CFS-type symptoms may be there for everybody; but in certain patients like myself, you get full blown ME/CFS, whereas in others just very mild versions of some of the same symptoms manifest.

So what? Can not many virus infections do that?

 

[taniaaust1]

SOC, I would be most interested to hear any specific words or quotes that have ever been made where somebody on this board claims to have been "cured" using yoga, or any other kind of treatment. I would also be interested to hear any suggestions being made that any these so-called "cures" applies to all or even most pwME. -- Quite honestly, I'm completely baffled by this continuing insistence that claims of cures are being made..

Wayne, I can say I have seen people post at PR saying they are or were cured by something which certainly doesn't usually cure ME before. Fortunately we don't see posts like that very often as the people do not last long at PR due to the comments they receive with such posts.

But many of us really dislike even seeing one of these posts as too often these things appear in the public media which seems to just love these cure stories but rarely report on severe ME.

 

[taniaaust1]

I wonder who wants us to believe that our own immune systems cannot recover function enough to wipe out the infections that are keeping us low and can do so without the intervention of money making anti-virrals? No prizes for guessing lol

Yoga along with many other natural modalities espeicially diet, have been found to enable it. Who does not like to hear this? Follow the money trail.

If it was just a case of boosting our immune systems, most of us would of done that by now and be cured! I wish cure was that easy.

I was a health freak when I developed ME, organic foods etc etc. I studied at a naturopathy collage at the time. I did all I could to boost my immune system when I first became sick and this ME still managed to get a hold (though in my own case it did take a while before it got a full grip on me and became an ongoing permanent like illness).

 

[MeSci]

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?

I suspect quite a few of us, including myself. I noted changes in my symptoms over time in my report for immunologist and retired ME specialist Professor Anthony Pinching, written in 2008. I reckon that a little knowledge that immunology was involved in ME, plus my observations of my own changes, could easily have led to such a suspicion. Maybe I already had such a suspicion.
Sorry about all the suspicion there!

 

[MeSci]

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.

Over-exertion while taking an ACE inhibitor came close to killing me twice, as it led to dangerously-low blood sodium (hyponatraemia), putting me in hospital the second time. Just a little lower and I could have died. I realised then that the saying "Hard work never killed anyone" was untrue.

 

[MeSci]

• Cat pose

I can do that if I can copy the cat who is lying next to me. It consists of lying on one side, front legs/arms stretched forward, and a blissful expression on one's face.