Daily Mail - yoga cures myalgic encephalomyelitis

[Gingergrrl]

@Hip Can you please stop tagging me in this thread? I keep getting notifications and I am well aware that you disagree with what I said and I don't have the energy to respond.

I am not in the UK and cannot give examples. All I was doing was saying that I agreed with the idea presented by Forbin as to why British tabloids cover these stories when American tabloids to not and I was trying to get a sense of what the "Daily Mail" was b/c I am not familiar with it in the US.

There are no "Fatigue Clinics" in the US which specialize in CBT & GET and the healthcare system here is very fragmented. I have been curious why certain things were different and there is less stigma here (it is more that we are invisible and almost zero government funding of this illness period.)

Forbin presented an idea as to why this may be and I agreed with him.

You are in the UK and I am not. If you are saying these things are not going on, maybe you are right and I have no desire to argue the point. I have been quite unwell this morning and woke up with very low BP and tachycardia again and was unable to stand long enough to even make myself breakfast.

Yet you have tagged me about 4-5 more times in this thread when I said I was backing out. If you could stop referring to me and insulting what you assume is my worldview I would appreciate it. Just leave me out of it and debate with those who wish to continue.

 

[Hip]

I will stop tagging you in this thread. I just have an automatic habit of placing an @ before any user names.

Hope your level of wellness perks up soon.

 

[MeSci]

I can't see that there is any evidence in the documents you uploaded of corporate collusion with Wessely (ie, rewarding Wessely for his newspaper article interviews).

The SMC are facilitating the interviews and hence the publicity. They are acting as a filter between science/quack science and the media. They provide the media with 'feeds'. The media find this so much easier and cheaper than having properly-educated journalists investigating a subject and writing an original article. Thus the SMC is driving the agenda for what gets in the media. That is their raison d'etre.

Once Wessely gets in the media, the rewards follow. The SMC may well get backhanders from that - who knows?

And the SMC almost-certainly have their own political agenda. They have very murky backgrounds, as you will find if you read some of the threads about them.

 

[Hip]

@MeSci
Certainly the Science Media Centres (there are several of them in English Speaking countries, not just in the UK) are there to promote corporate science and standard government policy.

The SMC articles on ME/CFS are heavily biased towards CBT / GET and Wessely school academics. In my view, this bias is far too heavy to conclude anything else but a specific agenda regarding ME/CFS.

Who is driving this agenda in the SMC is the interesting question. I would like to see the list of organizations who fund the SMC. There must be some reason why the SMC are advocating CBT and GET as a treatment for ME/CFS, and it's possible that reason might relate to an organization funding them.


Actually, I just found this list of current and previous funders of the Science Media Centre, on their website.

Funders on this list which might explain the CBT / GET bias of the Science Media Centre are:

• National Institute for Health and Clinical Excellence (NICE) — the organisation who set the treatment practices for the NHS. NICE advocate CBT / GET for ME/CFS.

• King’s College London — Simon Wessely and pals' home stomping ground (though many other UK universities are on the list too).

King’s College London, incidentally, has historically always been a pro-establishment university; it was set up on that basis; so it's not surprising to me to see these pro-establishment sheep like Wessely congregating there.

 

[alex3619]

This would be very interesting to research.

My guess is that all of us have both after a time. They are both nearly ubiquitous in adults. So I wonder if ti matters.

 

[svetoslav80]

Another "I cured (put your disorder here) with yoga" scam. I think yoga is the best way to train the body and mind (if your health allows it), and I hate when reading such misinformation about this practice.

 

[Aurator]

Who is driving this agenda in the SMC is the interesting question.

The fact that Mike Rawlins (former Chair of NICE) is one of their trustees is unlikely to mean the SMC can be impartial. We know his position on ME/CFS only too well. Wessely's role as an advisor there unbalances things for ME/CFS way beyond any kind of equilibrium of impartiality.

 

[MeSci]

Another "I cured (put your disorder here) with yoga" scam. I think yoga is the best way to train the body and mind (if your health allows it), and I hate when reading such misinformation about this practice.

When I was still in total ignorance in the early stages of my illness, trying to find a way to get fit and also reduce tension and anxiety, I wanted to try T'ai Chi, but I couldn't get to the classes (no transport as I could no longer afford to run a car). I doubt whether it would have helped in the slightest. Rest might have.

It took some time before I realised that I would not be able to do it anyway, at least not after continuing to push myself, notably by cycling...

 

[IreneF]

It's sad when certain practices or foods, which are healthy in their own right, are exploited and labeled "miraculous". I enjoyed yoga and it can be part of a healthy lifestyle, but it's not a magic cure for anything and can be hard on the body if practiced to excess. Likewise, blueberries, green tea, or whatever are not going to cure your ills.

 

[Undisclosed]

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 am so sick and tired of reading these ridiculous 'cure' stories. What if it was about Cancer, AIDS, Alzheimers, diabetes ...?

When one is chronically ill with a real physiological disease, it's ridiculous that changing your diet, leaving your husband, doing Yoga is going to cure you.

These cure stories do nothing for us except make people think that ME is easily curable, so really why research ME when it can be cured with yoga, supplements, divorce, mindfulness, CBT, etc, etc. It just plays into the hands of Wessely. Anybody who believes that Wessely doesn't have a lot to do with press coverage and the dismal treatment of patients in the UK is woefully naive and ignorant of what he has done.

 

[Ecoclimber]

I am so sick and tired of reading these ridiculous 'cure' stories. What if it was about Cancer, AIDS, Alzheimers, diabetes ...?

When one is chronically ill with a real physiological disease, it's ridiculous that changing your diet, leaving your husband, doing Yoga is going to cure you.

These cure stories do nothing for us except make people think that ME is easily curable, so really why research ME when it can be cured with yoga, supplements, divorce, mindfulness, CBT, etc, etc. It just plays into the hands of Wessely. Anybody who believes that Wessely doesn't have a lot to do with press coverage and the dismal treatment of patients in the UK is woefully naive and ignorant of what he has done.

Back in 2013, I said the ME/CFS IOM report will label ME/CFS with the same label as the Gulf War Veterans; chronic miultisymptom illness, CMI, with anti-depressants, CBT/GET, talk therapy, St. Johns Wort, acupuncture, and meditation (Yoga, etc.) as the only treatment options. Otherwise, they would have to overrule their findings on their report with the Gulf War Veterans. I would be curious if indeed my predictions are close. I hope not.

 

[Undisclosed]

Back in 2013, I said the ME/CFS IOM report will label ME/CFS with the same label as the Gulf War Veterans; chronic miultisymptom illness, CMI, with anti-depressants, CBT/GET, talk therapy, St. Johns Wort, acupuncture, and meditation (Yoga, etc.) as the only treatment options. Otherwise, they would have to overrule their findings on their report with the Gulf War Veterans. I would be curious if indeed my predictions are close. I hope not.

We will know on Tuesday if the IOM has screwed us. I hope you are wrong.

 

[Hip]

Another story of yoga facilitating recovery from ME/CFS:

On the Path: Dan Moricoli's Remarkable Chronic Fatigue Syndrome Recovery Story - Health Rising

 

[Mij]

Unfortunately, pacing, yoga and nutrition does not cure the pathology of PEM.

 

[alex3619]

[Satire On - not serious] I have a new magical cure for CFS. Send me $999.99 and I will send you a small box of magical air once a month for a year. Just open the box and breath it in, but do avoid draughts as it can disperse the magical air. At the end of that time you will be cured. Its a bargain at that price! Hurry, limited stock available. Orders received before the end of April will get TWO boxes the first month, for double the impact or to share with a friend. Works especially well with other magical treatments. [End Satire]

 

[Valentijn]

Another story of yoga facilitating recovery from ME/CFS:

On the Path: Dan Moricoli's Remarkable Chronic Fatigue Syndrome Recovery Story - Health Rising

Well, Cort has opted for the financially profitable model of running a ME/CFS website, so I guess that's the sort of drivel which results. I'm very glad that he wasn't able to do that to Phoenix Rising.

 

[alex3619]

There is not much to object about on Cort's blog. Yoga is a minor subpoint in a larger discussion, including heavy emphasis on pacing. Part two might be different though.

 

[Cort]

Cort would have had this story on Phoenix RIsing in a second. Cort, in fact, did have stories like this on Phoenix Rising while he was here. Cort's commitment was to provide access to any treatments that worked in the hopes that if they worked for one person somebody else might benefit.

Cort wasn't focused on what the treatments were - he was and is focused on the fact that someone was helped. So long as the story was legitimate and the person had some form of ME/CFS he (I) was very glad to bring them to the community. Dan Moricoli clearly had a ver severe case of ME/CFS.

Yes, blog number two will focus very heavily on yoga - something that in this case, for this person, has been very helpful. ME/CFS is a very heterogenous disease. Giving that heterogeneity I would expect all sorts of approaches to work for one person or the other.

The financial model for Health Rising is the same as it was for Phoenix Rising - it's almost entirely donor driven.

 

[MeSci]

There is not much to object about on Cort's blog. Yoga is a minor subpoint in a larger discussion, including heavy emphasis on pacing. Part two might be different though.

The exercise regimen referred to looks like the one dealt with here.

 

[Undisclosed]

The financial model for Health Rising is the same as it was for Phoenix Rising - it's almost entirely donor driven.

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