Daily Mail - yoga cures myalgic encephalomyelitis

[taniaaust1]

Next weeks daily mail article "Not watching TV cures CFS". I had a dietitian once tell me that.

 

[WillowJ]

It is one of the worst papers there is. Absolutely ruthless in publishing unfounded claims and just making stuff up to sell papers.

that's terrible

 

[Wildcat]

.
'Graded exercise yoga' ...... is still graded exercise.
.

 

[Hip]

@Hip the people in that study got sick with mono at a younger age which I think was in their favor. In addition, they all self reported as having had "mono" none had an EBV test so it is unclear what they truly had as their original trigger. This also seems totally unrelated to the claim that yoga can heal ME.

When there is s story of some person being cured (or put into remission) from ME/CFS by some seemingly unlikely treatment, members of this forum will often say: "well, that person did not have ME/CFS in the first place".

Now whereas it is of course possible that they may not have had ME/CFS, in this mononucleosis study, the fact that 28% of patients whose ME/CFS was induced by mononucleosis are back to full time work after around a decade indicates that, at least for this subset of patients, ME/CFS is quite possible to substantially recover from.

So this mononucleosis study shows that the propensity to substantial recovery is there, even though it is a minority, not the majority, who substantially recover, in this mononucleosis subset.

Now, since that propensity for recovery is there, if you assist that propensity further, by doing something which for you seems to be supportive of your health, such as a change of diet or yoga, it may conceivably further speed or catalyze that propensity to recovery.

Or, as I mentioned, it may be coincidental: your body may have been naturally recovering anyway all on its own, but you attributed your recovery a treatment that you happened to be doing during this period of natural recovery.



What I am basically trying to do here is look at the known facts, and from those facts, get a sense of how likely this yoga/diet recovery story is. If recovery is as common as this mononucleosis study has found, then this makes the story more plausible, in my view.

I wish there were more studies on recovery rate, though, especially for patients with enterovirus-associated ME/CFS, which I have a hunch might be the hardest form of ME/CFS to cure.



Regarding the causes of mononucleosis: it says here that EBV causes mononucleosis in more than 90% of cases, and it says here that cytomegalovirus causes 7% of cases. So EBV and CMV account for nearly all mononucleosis cases. Like EBV, CMV is another virus associated with ME/CFS.

 

[NK17]

Some of us with ME diagnosed by ME specialists' in the US, have both a history of IM (infectious mononucleosis) due to EBV and/or CMV and chronic EV enteroviral infection/s (Echo and Coxsackies viruses).

 

[Gingergrrl]

I was just tested for echo and coxsackie viruses for the first time mid January and still waiting for my results. I think many people fall into both groups.

I think post viral fatigue from mono at a young age, you have a better chance of recovery but once you get a reactivation which leads to severe ME, I don't think that is the case. That study was flawed for many reasons stated in the original thread by other posters.

I also think the UK is highly invested in reporting ME recovery stories for political reasons as @Forbin said and they have a strong need to control this message and agenda so these stories show up in the tabloids. They find people with chronic fatigue vs. ME and then report it is cured through food, exercise, yoga, and any factor they choose on any given day.

We do not see these stories in the US b/c this illness is mostly invisible to the general public. Here the tabloids are focused on celebrities (along with stories about aliens and big foot like Willow said) and the tabloids here have no credibility.

 

[Mij]

I'm not a conspiracy theorist but I am starting to think along the same lines as@Gingergrrl What I have been reading coming out of the UK is stranger than fiction.

 

[Hip]

What I have been reading coming out of the UK is stranger than fiction.

In what way stranger than fiction? I find these ME/CFS articles in the UK press rather banal and boring, but I cannot see anything strange about them.

I have performed three Google searches to pick up the story archives of three major UK newspapers: click the links below to see them:

Search for ME/CFS stories in the Guardian (this is a left wing / liberal broadsheet newspaper)

Search for ME/CFS stories in the Daily Mail (this is a conservative, traditionalist, family value-type tabloid newspaper)

Search for ME/CFS stories in the Sun (this is a gutter press tabloid, full of naked breasts and suchlike)


You can ascertain quite quickly from the Google search result titles the nature of each ME/CFS article.

I cannot see any evidence of political control, or anything strange about these articles.

 

[IreneF]

@Hip the people in that study got sick with mono at a younger age which I think was in their favor. In addition, they all self reported as having had "mono" none had an EBV test so it is unclear what they truly had as their original trigger. This also seems totally unrelated to the claim that yoga can heal ME.

I had mono in about 1970. It was diagnosed by looking at changes in blood cells.

 

[IreneF]

Next weeks daily mail article "Not watching TV cures CFS". I had a dietitian once tell me that.

How would a dietician know that?

I don't watch tv. I don't think it's made any difference in my health.

 

[eafw]

Wow, what a strange conspiracy-theory worldview.

Where do you live Hip ? Because the reality in the UK is that the reporting of ME is very political and very much managed. You don't see it from a cursory glance, doesn't mean it doesn't exist. There are plenty of us here long time veterans of dealing with the UK establishment on this issue, and it is a serious and very real problem.

 

[Forbin]

It isn't a conspiracy theory to assert that, in a public debate, one side or the other will use what resources they have to sway public opinion. That's just politics, the art of influencing people.

A by-product of successfully promoting the view that "rehabilitation" is the key to dealing with ME is that it creates a climate where any rehabilitation claim can be seen as a legitimate news story. This, obviously, does not require a conspiracy.

Whether this in some way serves the interests of those officially promoting "rehabilitation" over biological research, I don't know.

However, one might ask if those who officially promote "rehabilitation" have made any effort to distance themselves from such stories by, say, emphasizing the serious nature of ME and the limited results of their own professional rehabilitation efforts.

Qui tacet consentire videtur.

Bueller?

 

[Hip]

Where do you live Hip ?

I live in the UK.

Because the reality in the UK is that the reporting of ME is very political and very much managed.

Not managed by the press.

Think about it: if the neither the UK nor US government could prevent the publication of the Edward Snowden's classified security information — and there in nothing more important and higher priority to a nation that national security — that should be ample evidence that the press in the UK and US are totally free and unshackled by the government.

Now, individuals like Simon Wessely may be quite media-savvy, and good at getting his articles and views published in newspapers. And some journalists may be gullible enough to fall for his charms. But generally I find that newspapers are more sympathetic to ME/CFS than your average member of the general public.


It's paranoid conspiracy theory thinking to suggest that all these ME/CFS recovery stories are deliberately planted in the press to further some political agenda.

Stories of people recovering from disease are always interesting, and that's why they are there. And think about this as well: people that recover from a disease like ME/CFS are often ethically motivated; they want to tell their story because they want to help others. Wouldn't you do that? If you found a treatment that worked for you, wouldn't you want to publicize it in order to help others?

I heard a radio broadcast some years ago of an individual who had greatly improved his ME/CFS after one year on an alkalizing raw food diet, and was talking about this. Are you really trying to tell me that all is not what it seems, and there is a sinister plot masterminded by some dark forces to put this person on the radio to further some political agenda?

 

[Aurator]

I just checked out the article and found it interesting and plausible. Here's the wrap-up at the end--looks like she did a lot more than yoga.
-
Slowly, I began to feel stronger and was able to do some of the stretches. But it was the mindfulness yoga brought that affected me more deeply. I began to feel more in tune with my body.

I realised to recover fully I had to rethink my life. I changed my diet, giving up sugar, dairy and wheat, and started reading more, something I’d not done for years. I also left my husband of four years; it wasn’t easy and he’d done nothing wrong, but I wasn’t happy any more.

I loved yoga so much that I signed up for a three-and-a-half year teacher training course with the British Wheel Of Yoga and qualified in 2008. Yoga didn’t just change my life — it gave me my life back.

I do find this kind of single-minded complacency that is sometimes to be met with in recovered ME patients a real sympathy loser. The subtext of the present example seems to be:
"Unlike the majority of PWME, I had the willpower to drag myself off the sofa and get to yoga classes. I learned not to be a whining slob who ate too much garbage and couldn't think straight. Instead I took charge of myself, became all lithe and graceful and "in tune with my body", and acquired that elusive thing that only a few deep and clever people like me can acquire: "mindfulness"; which if I'm being honest means in essence that peculiar brand of selfishness they teach you on daytime talk shows featuring people who dump their partners, like I did, just because they fancy a change. Well, 'I'm worth it', as they say."

 

[Hip]

@Aurator
Are you sure you are not putting words into Sally's mouth?

 

[Wayne]

The subtext of the present example seems to be:

@Aurator, just to mention. I've run across a number of testimonials by people who feel they've partially or fully recovered from ME/CFS. Sometimes it was spontaneous with them not doing anything but resting, but often they did adjunctive therapies to help them rest and heal. -- The CFS forum ME-CFSCommunity has featured instances of pwME/CFS being helped by yoga. So it wasn't just the Daily Mail article I was responding to when I used the word plausible.

It seems most long-term pwME/CFS are aware that if you're going to recover from this illness, your best odds are in the beginning phase. The young woman featured in the Daily Mail article seems to fit that profile. I often think that if I had done something similar to what this woman did in the beginning of my illness, instead of trying to push through it for years, my outcome might have been much better.

I'm not going to try to change your opinion of this particular young woman, but I've come to appreciate those who've gotten better and chosen to come forward with their improvement stories, even though they most likely know it will subject them to a certain amount of disdain and/or critcism. Quite honestly, I'm not sure if I would have the same degree of courage if I was fortunate enough to improve my health significantly.

Best, Wayne

 

[eafw]

I've run across a number of testimonials by people who feel they've partially or fully recovered from ME/CFS. Sometimes it was spontaneous with them not doing anything but resting, but often they did adjunctive therapies to help them rest and heal.

I think that people are mistakenly crediting what they actively did (eg Yoga) rather than what they "inactively" did (ie rest) or had little control over by the point they got ill (genetics, immune response and so on)

So people will say "I cured my ME with yoga/carrot juice/chicken soup/meditation/learning to knit/living in a house where all the walls are painted blue" when actually it wouldn't have mattered what they chose - apart from decent rest, and being lucky enough to have practical support and an immune profile that was able to settle down when it wasn't being continually pushed.

Fair enough if yoga is a tool that people use to help them maintain a restful state when they need it and then build up strength when they are able. But that's all it is, and certainly not "and now everyone else should do this too" which generally gets tagged onto these recovery stories as well.

It seems most long-term pwME/CFS are aware that if you're going to recover from this illness, your best odds are in the beginning phase. ... I often think that if I had done something similar to what this woman did in the beginning of my illness, instead of trying to push through it for years, my outcome might have been much better.

Yes, but if you had a time machine and went back the advice would be rest, recuperation, understand the illness, don't push - not "yoga" in and of itself.

 

[eafw]

Edward Snowden ... should be ample evidence that the press in the UK and US are totally free and unshackled by the government.

I actually, literally Laughed Out Loud at that.

It's paranoid conspiracy theory thinking to suggest that all these ME/CFS recovery stories are deliberately planted in the press to further some political agenda ... Are you really trying to tell me that all is not what it seems, and there is a sinister plot masterminded by some dark forces to put this person on the radio to further some political agenda?

Yes Hip, that must be it. There is no such thing as social and political influence, the government is the be all and end of all institutional power (and fully accountable to the populace) - and those who would say this is not so or engage in any sort of analysis of wider culture, power structures, resource allocation and the way that information is fed to the general public are paranoid.

Also, along with the unthinkable notion that the press are (horrors!) biased, we believe that the Royal Family are in fact purple shape-shifting lizards from a faraway galaxy and at the end of the day it is all their fault for everything. Dark forces and alien overlords rule. All is really not what it seems - dun dun dun !!

Now excuse me while I adjust my tin foil hat and normal service will soon be resumed.

 

[Kenshin]

Of course there is conspiracy involved, most things in the media are specially designed or selected to sway public opinion or fit inside "the box" so as not to promote free thinking.
This is nothing new, its called propaganda and is a standard practice of any government running a democracy.

I totally agree with Ginger, yes it is stranger than fiction, yes severe and damaging misinformation is perpetuated by the media about M.E, and no its not all a big coincidence, you would have to be naive to believe so.

As for yoga I found it only increased my muscle pain and dizziness/pots symptoms.

 

[Aurator]

@Aurator
Are you sure you are not putting words into Sally's mouth?

Yes, but not completely without justification, I'd like to think.

I think that people are mistakenly crediting what they actively did (eg Yoga) rather than what they "inactively" did (ie rest) or had little control over by the point they got ill (genetics, immune response and so on)

So people will say "I cured my ME with yoga/carrot juice/chicken soup/meditation/learning to knit/living in a house where all the walls are painted blue" when actually it wouldn't have mattered what they chose - apart from decent rest, and being lucky enough to have practical support and an immune profile that was able to settle down when it wasn't being continually pushed.

Fair enough if yoga is a tool that people use to help them maintain a restful state when they need it and then build up strength when they are able. But that's all it is, and certainly not "and now everyone else should do this too" which generally gets tagged onto these recovery stories as well.

That's one important reason for my lack of sympathy with these sorts of stories. The suggestion by a few lucky people who, for whatever reason, have recovered from ME that other sufferers can and therefore should take active steps to rid themelves of this illness only serves to lend credence to the old view that has been so pernicious to the welfare of PWME over the years: that the perpetuation of our illness is to some extent a matter of personal choice, and if we really wanted to get better we'd take the necessary steps to do so.

I've got two things to say to anyone who holds that view: firstly, there are no known "necessary steps" to get better from this illness. Secondly, do you honestly think the people who happen to have not got better are just not trying hard enough? Do you honestly think it is only you who has tried hard enough and that there aren't other people out there who may have tried even harder than you but still can't get better? People who were once active, intelligent and fulfilled human beings will generally do everything humanly possible to get their old life back, and in the meantime have to summon up a superhuman strength of will to get through every new day as shadows of their former selves.