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

Very sorry to hear that @rvallee. Must have been really scary. I hope you have secure place to live now.

 

@Wonko I like your "treatment" of Deep Space Nine! When I was first ill the crew of Next Generation were my constant friends. I think sometimes TV can be quite helpful for bed-bound and sick people. Unlike most of the carp in the book (which I have actually read) described in this article. Sending cyber hugs to you if you feel able to accept them.

 

What? You don't watch Endeavour, Lewis and Morse? I like Vera too, husband is a bit off about the latest series. Says he thinks it's a bit more of the same. I don't mind that.

I can't help feeling that TV therapy might be a lot better than CBT etc. Not curative of course, but cheering-up-ative. As I said to Wonko before, when first ill my best friends were the crew of Enterprise (Next Generation).

 

Yeah I'm OK, thanks Kinda. Best I can say is: I'm safe, for now. As long as my parents are healthy I should be fine. But if this drags too many years then uncertainty will increase.

 

Hi @ladycatlover, I watch all of the shows you mentioned - love 'em. Poldark too.

 

Further to the people I heard about who "recovered" - most of them were doing part-time work, rather than full-time work.

Only one who was much younger went back to full-time work.

I think most, or all of us are so desperate to recover, if we see a glimmer of hope we jump on it.

Medical advice that ME is short-lived seems incorrect at best; at worst, it devastates us.

Early on, I eagerly watched for signs of improvement, as if I just had the flu, and would get well soon.

I was very hopeful, and expected to recover, as medical advice said I would.

Without this recovery, in addition to being told others are getting well, and back to normal, one starts to think, "what's wrong with me?"

 

I have been frustrated by the small (very small perhaps) percentage of people who improve who go on to donate to the cause. These people more than most in society should know how real it is. My speculation is a lot of them blame other patients for not getting better. A stronger research base might change such views. Also if they knew they were at risk of getting worse again, they might be more inclined to financial support ME causes like research funds.

 

One irony with pwME, is that despite being very, very ill, we often expend what little energy, and funds we have trying to recover.

A lot of us are, it seems attempting the impossible.

If I could be reimbursed for all the self-help/meditation/believe you will get well books, and the supposedly effective alternative therapies, some of which caused lasting problems, I would be much better off, thank you very much!

 

I should know this but can't remember offhand: are there many, or even any, studies that have found this?

 

Only 2 tweets on this which seems low for a national newspaper article. Maybe it is the fact that it is behind a paywall.
https://twitter.com/user/status/1094994525162999808

https://twitter.com/user/status/1095095824281993217

 

It would be great if we could get the science to a stronger, more robust level. Reading this article does remind me that our foundations aren't 100% immune to scepticism; and also similarly it would be good if we were in a stronger position scientifically to deal with some weak arguments in articles like this.

 

Life is, at least in part, about attempting the impossible. Without that we wouldn't have even learned that hitting each other with rocks was a successful way to run an economy. Not a good way, but a successful one. Let alone advanced sufficiently to be constantly driving into people whilst texting, something that would have been impossible a mere 200 years before.

The trick with impossible things appears to not be in doing them, it's in being able to keep doing them. Once you realise that then life becomes...simpler.

Simply abandoning the idea of getting better, forever, and instead trying to improve function now, for a limited period, to do something that's important to you, that may be possible, where getting better simply isn't

Realism, when faced with reality, is an important concept to grasp. As is that things always get worse, it's practically a law of nature.

So I'm trying to improve capacity now, or at least over the next couple of months (some things take time), as it looks like that may be possible. After that, who cares, things were going too get worse anyway.

Sorry if that's insensitive, I know a lot of you aren't at a place where you can do anything to improve things even for a few hours, I lived there for a very long time, or that you have responsibilities that dictate that you can't put everything into one last push, but I've done my time for other people, there is no one left I feel responsible for, it's my time now.

 

Yes, @Wonko, after a long time at this "game", one may wish or aim for even a little improvement, as opposed to a lot.

Because we can see that what "they" told us would happen - the huge recovery, isn't going to materialize.

Improving function, even a little function, is more realistic especially without the "wonders of modern medicine" to help us!



(What other patient community is expected to magically recover from such a complex, multi-symptom, devastating illness? Can we name some?)

 

https://twitter.com/user/status/1095178343522160640

 

Do wonder if this might be the beginning of a series of articles - connected to the Tuller interview....?

Wording like 'CFS hardcore' seems unusual, even for a journalist that belive the bps mantra? And from what is quoted here, this is a story of a patient hurt by the uncertainty patients advocates bring when challenging 'sound' medical advice - driven to alternative treatments....?

Or I might be over-suspicious...

Would any of the patients organizations write a reply to this? "This is where he hears the words of the CFS hardcore, who tell sufferers to be very careful not to exacerbate the condition." vs the NHS doctors 'sound' advice.

 

Morning,

The article is based on a podcast interview. It would seem from the podcast that Duerden couldn't get a diagnosis on the NHS and turned to alternative medicine for help. I think he says that he couldn't meet the criteria for ME/CFS but the immunologist he saw on one visit also expected him to be suffering with depression which muddied the waters of the podcast for me.

His entry into 'chronic fatigue' seems to have followed several instances of bad flu from which he never recovered full function. The importance of an accurate diagnosis seems to have been lost on the podcast - as does an accurate description of what M.E. is believed to be.

Duerden's descriptions of some of the alternative therapies appears pretty good when compared with my own desperate searches for treatment. Lot of snake-oil out there. But, again, the waters are muddied unnecessarily I think when talking about symptoms and in regard to 'exercising your way out of it'. It could have been a much better podcast and article than it was. I don't think much effort was put into it.

Would have made it better to have also interviewed some clinicians or researchers from the field of M.E. - even members of charity organisations for their views. Duerden also talks about his having dysfunctional mitochondria but it wasn't clear who told him that or why he felt it might be accurate - but most of all I was confused by his seeming lack of a M.E. diagnosis.

N.B. The podcast series from Richard Holt is not as popular as The ME Show. Maybe he wanted some controversy to increase the ratings? I don't think Holt should be throwing advice at people who are sick. Even if he does think it logical.

Russell

 

Funnily enough there is no mention of the podcast or the newspaper article on Nick Duerden's Twitter feed, surprising given that the podcast has been out for 10 days or so.

 

Thanks @Russell Fleming. I must have blanked that out as I simply can't manage to listen to podcasts. There's just something about them that sort of sets my teeth on edge. Maybe it's trying to take something in audibly is more difficult for me than print as you can take your own time to get the meaning out of print items?

Have to say that I found the book profoundly irritating!

 

I doubt this would hold up to proper scrutiny. I am reminded of at least one study that demonstrated prayer improved survival rates in cancer patients.