Daily Telegraph: Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome

John Mac

John Mac

Senior Member (Voting Rights)
https://www.telegraph.co.uk/health-fitness/body/confusing-fog-chronic-fatigue-syndrome/

Article on the Daily Telegraph website, requires you to register to view the whole article.
Not a recomendation as it goes on to describe a writer's use of alternative medicine to try to overcome his illness.

A life sentence. A slow death. A living hell.
These are just a few ways that people describe what it is like to suffer from chronic fatigue syndrome (CFS), or ME. Yet a lot of people don’t even believe it exists. And not just the uneducated masses. Scotland’s chief medical officer, Dr Catherine Calderwood, said that almost half of all general practitioners do not think it is a real condition.
So what is the reality? How do we best see through the fog of contradictory positions on what was once cruelly labelled “yuppie flu”?
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One of the problems with tackling chronic fatigue is that there are not many facts out there about it – at least, not any that everybody can agree upon.
In fact, even the name isn't clear. Depending who you ask, ME (myalgic encephalomyelitis) and CFS are either separate but similar conditions, or two names for the same thing.

One doctor recently explained the differences between the two to me at length and when he finished talking I understood less than when he started. For the sake of brevity (and sanity), I'm going to treat them as the same thing here, because that's what the National Health Service says.

Cases of something called post-viral fatigue have been known about for centuries, without controversy. There have been widespread cases of patients recovering from viral infections only to suffer lingering symptoms of exhaustion. Cases of this becoming chronic became well-documented in the mid 20th century, with patients reporting a wide-range of symptoms.

The most common is persistent tiredness, but it can include problems sleeping, feelings of dizziness, muscle and joint paint, flu-like symptoms and difficulty thinking clearly.
Many sufferers are left unable to leave the house, and some can’t even get out of bed or read a book. There is no blood test for the condition, and doctors can only give a diagnosis by looking at the symptoms and by eliminating other things like depression and Lyme disease.
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After diagnosis, the next issue is how to treat CFS.
The health service generally recommends cognitive behavioural therapy combined with a graded exercise programme.
This makes a lot of sufferers angry, as they insist that CFS has a purely physical cause, so talking about it with a therapist is no good. As far as exercise goes, they believe that if you fight the tiredness and push yourself, you will end up making yourself sicker.
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The article goes on to describe the case of Nick Duerden a writer who wrote:
'Get Well Soon: Adventures in Alternative Healthcare'

It mentions how in desperation to get his life back on track, Duerden found himself turning to alternative medicine.
He went to see spiritual gurus, invited healing hands to be laid upon him, and even tried something called “F*** it therapy”.
 
What would happen, I want to know, if he just started forcing himself to do more, to gradually increase his levels of physical activity. This is where he hears the words of the CFS hardcore, who tell sufferers to be very careful not to exacerbate the condition. Duerden says he recently saw a cognitive behavioural therapist on the NHS, who told him: “Oh just ignore those people, they’re talking rubbish. You have to do more and more activity. You are very unfit. You have to get over this sense that physical therapy is bad.”

So why doesn’t he, for the sake of his family, just force himself to get out and do more? Duerden says he would, but he is caught between two sets of advice: one tells him to increase his physical activity; the other says that is the last thing he should be doing.

At this point, I can't help wondering whether sitting on the fence is not the best way forward. There is a telling phrase in what one expert told me.

“One of the characteristic features of chronic fatigue syndrome is profound tiredness after unaccustomed exercise,” said Dr Simon Aylwin, Consultant Endocrinologist at London Bridge Hospital. “It makes the immediate symptoms worse but does not make the condition worse. However, the mainstay of therapy is a graded exercise programme, gradually increasing daily activity over time, as well as cognitive behavioural therapy. One of the main predictors of a good outcome is a belief that the syndrome will get better.”

:banghead:
 
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Dr Simon Aylwin is a consultant endocrinologist broad clinical practice in endocrinology and special interests in thyroid disorders, thyroid nodules, pituitary tumours, adrenal tumours and cancer, neuroendocrine tumours, inherited endocrine tumour syndromes and obesity.

Dr Aylwin has an extensive thyroid practice and leads the pituitary and adrenal multidisciplinary teams at King’s College Hospital where he has his NHS practice, managing patients with pituitary and other endocrine-related tumours and cancers. He also works as a physician alongside bariatric surgeons managing patients with severe obesity and has an academic interest in appetite regulation. He graduated from Queens’ College Cambridge in 1987 and undertook clinical studies at the Royal London Hospital, qualifying in 1990. After MRCP in 1993 he undertook specialist endocrinology training and research studies at Bart’s and the London leading to a PhD awarded in 2001. He took up a substantive post as a consultant endocrinologist at King’s College Hospital in 2002. Dr Aylwin has a well-established private practice at the London Bridge Hospital and at The London Clinic that mirrors his NHS work. Dr Aylwin is the Lead Clinician for Endocrinology at King’s College Hospital.

I suppose that is as good a reason as any for knowing so little about ME.
 
Andy said:
Well, we have to be 'hardcore' to deal with this condition. We'd be 'really hardcore' if our condition was life-long but the author has told us that it isn't, cos, you know, he writes words and makes a podcast and does jiu jitsu, all things that make him qualified to say...
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I'm still waiting on someone to explain how we are supposed to behave compared to how they think we should behave if we were wrong. AIDS advocates were 100x as militant as we ever were (thanks to healthy allies). Every other thing is exactly as you'd expect, especially being consistent over several decades. In addition of course to some actual domain experts work hard at it.

But, sure, bacteria can't possibly survive in the stomach so your peptic ulcers cannot be caused by anything but your anxiety (which no one can test for so... jazz hands) and you're an idiot for suggesting otherwise.

Like all those "hardcore" MSers, doing their hysterical paralysis as if their life depended on it. A real paralysed person would totally... behave... differently than being paralysed... somehow. But one thing is certain they would never insist on it, any really sick person being told it's actually their fault would totally spontaneously heal because that's how life works.
 
"One of the main predictors of a good outcome is a belief that the syndrome will get better."

I was told more than once by a couple medical authorities that "cfs" is short-lived. I kept hoping, but was concerned and puzzled that I wasn't meeting their arbitrary deadline. I heard generalized stories about their other patients who were back to work, and doing well. I wondered why I couldn't get well. I tried many therapies - both basic, as in good nutrition, mild exercise, and other things.

Alternative practitioners I saw confidently reassured me all their patients with "cfs" were back at work - same story as with the mainstream practitioners. Except the alternative practitioners made more money selling lots of "remedies".

If one of the vital ingredients we need to get well is the belief we will, why aren't many more of us recovered? Or are we such a cynical bunch in general? The "non-believers", at least where ME is concerned.

This comment, or prescription that we must believe we will get well, in order to recover, seems to fall under the realms of faith healing, magic, or mind over matter.

Medicine still doesn't have much to offer us, so instead it lobs the ball back at us - believe you will get well; if you don't get well, you have faulty thinking, or don't really want to get well. "It's our fault".
 
I lost my business, my home, and a few years later, my marriage (although it has recently emerged that other factors were also involved in that), long before I knew anything about ME. I believed, if I believed anything, that nothing was seriously wrong, that odd isolated incidents didn't really mean anything. I didn't know that I was working until I crashed, and then spending a few months where nothing happened. I didn't really remember the crashes, at least not how long they were, all I knew was that when I resurfaced people were very annoyed with me, that somehow I'd let them down. The odd person, although not many, would explain how.

So all this mental attitude predicts outcome thing is total BS - a lie.

ETA - my current F**K IT!!! therapy seems to involve lots of carbs and binge watching deep space nine. Along with generally not giving a f**k about the cost or consequences of anything, at least until I run out of resources.
 
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During my last remission, I was so willing to believe that it was all behind me that I bought a condo. If it wasn't for the most incredible bit of luck that freed me of the contract (I relapsed a few weeks after signing) I would have probably gone bankrupt. Despite this I was severely in debt, it would have crushed me.

So up yours with your stupid "belief correlates with improvement" BS. In reality it's much simpler: "belief correlates with belief". There, fixed it for you.

Of course that was the thing of beauty about rebranding it as a chronic fatigue disease. What is chronic fatigue, you say? Whatever the hell you want it to be, it's literally untestable and will never be so. It's whatever the faith healer wants it to be.

When your solution to "this diagnosis is too vague for me" is to give the vaguest, most hand-waviest of all possible BS explanations, somehow I suspect that "vague" isn't actually the issue, especially when vague actually means complex in this context.
 
People with cancer who have more positive cognitions about prognosis have better survival rates. That's not because of the remarkable power of the mind though, it's because peoples' beliefs are often influenced by reasonable judgements about their situation. If someone knows that they've just had a stressful period at work, bereavement, etc, then they could fulfil a criteria for CFS and reasonably expect to recover soon, that doesn't mean that it's valuable for other people to try to adopt a more 'positive' view of recovery.
 
Esther12 said:
People with cancer who have more positive cognitions about prognosis have better survival rates. That's not because of the remarkable power of the mind though, it's because peoples' beliefs are often influenced by reasonable judgements about their situation. If someone knows that they've just had a stressful period at work, bereavement, etc, then they could fulfil a criteria for CFS and reasonably expect to recover soon, that doesn't mean that it's valuable for other people to try to adopt a more 'positive' view of recovery.
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It’s also a self fulfilling prophecy if you believe you will get better and then do. I think we all start out believing we will get better, but when it doesn’t happen we adjust our beliefs. Had I slowly improved after the first year or two I would probably agree that my optimistic outlook helped me get there. I really wish we had more data on the various forms and outlooks this illness can have.
 
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