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NetDoctor - New article on ME/CFS (UK)

charles shepherd

Senior Member
Messages
2,239
New article on ME/CFS on NetDoctor (UK) >>

http://www.netdoctor.co.uk/healthy-...al&utm_source=twitter.com&utm_campaign=buffer

Just in case this isn't clear:

The MEA did not write this article

As happens on a very regular basis, we are asked to supply basic information on ME/CFS by a journalist or health writer - which we do

On some occasions we are then asked to check what the journalist has written after proving background information, case histories etc

But in most cases we do all we can to help but have little or no control over what is then published

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Well, I think it's obvious the bits that remain true to the MEAs input and those which the journalist added.
However, recent breakthroughs in research – most notably the landmark trial of intensive online therapy, found to successfully treat two-thirds of teenagers suffering with the condition – saw ME hitting headlines at the end of last year.
:bang-head: Most notably to whom? (or who, I can never figure that out...). All we need, a Crawley fatigue circus act, touted as the best thing to happen for ME recently.

Then you've got the typical snoozy models in the pictures in the article, and the "helpful" related articles "7 Natural Ways to boost your energy" and "The healthiest resolutions you can make this year".

Comments can't be left on the article but could be left on their Facebook post https://www.facebook.com/netdoctoruk/posts/1618799668147092
 

A.B.

Senior Member
Messages
3,780
"I worked hard on recovering (because doctors tell you that you will recover), slowly upping my activity levels. I did everything doctors and therapists told me to do, including the lightening process – a three-day personal training programme – among other things. At 26 I got into university and for the first four months I thought I was doing great, I was going to make a full recovery and get back to living life like everyone else my age."

"Reality struck when I realised I was 'crashing' a lot. My symptoms gradually got worse and worse and I tended to relapse at the end of each academic year, meaning that while everyone else went on holiday, I had to rest."

"In my second year I privately tried to ask a tutor for help with a deadline as I felt I was falling behind due to my health, but did not receive any assistance. In my third year I was so excruciatingly fatigued that I cried every day out of pure frustration. I made an appointment with a GP out of desperation who told me that if I did breathing exercises I would be much better, but when I informed him that I already did breathing exercises I was told that I was doing the 'wrong ones'. I've met many a GP who will dismiss it as basically nothing or, worse, tell me I have health anxiety or hypochondria."

"I am now 29 and three months into the worst relapse I have ever experienced following the completion of my degree, and am not well enough to start a masters degree or work. It's difficult for me to go anywhere alone as the dizziness and general cognitive dysfunction can get a little bit frightening. I can't drive now, I wear sunglasses indoors and earplugs in the supermarket."

"Despite all this, I finished my degree on time with a first. If nothing else, this syndrome has made me so much more driven to achieve something meaningful so that I can metaphorically stick my fingers up to the people who thought I feigned illness for attention and who think it's just laziness.

"I have been forced to reevaluate my life goals, accept my physical limitations and that I will likely never be able to keep up with my able bodied friends but, weirdly, I am feeling the most positive I have felt in ten years. Long may this lack of depression reign!"

After being given bad advice from doctors and getting worse, this patient is coming to terms with reality and surprisingly feels better emotionally. Would the outcome have been better if reality-based medicine had been practiced? We don't know but it would probably at least saved this patient from unnecessary disappointment.

"I did cognitive behavioural therapy (CBT) for over a year after doctors lead me to believe they would, at the very least, make a huge difference. When I realised that they had made no difference to me whatsoever it was the most gutted I had ever felt about anything." People are different and respond differently to treatments.

It's not a matter of individual differences. CBT simply doesn't work. The research shows this as well, but the authors distort the results and claim it works. Which leads to stories like the above, where patients are asked to achieve the impossible.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I left a comment as well. How do UK journalists not notice that they cite White, Chalder, Wessley over... and over... and over again. Surely these three scientists who work together can't represent the only view of an illness. It's maddening because it's Just. So. Lazy.

and they should know. after all, they carry things like this article in today's Guardian which spells out a lot of the problem:

The replication crisis in psychology and the life sciences, in which “sexy” papers fail to stand up to closer scrutiny, can be blamed in part on scientists being motivated by a need for attention and authority as well as curiosity about the natural world,... Overall, 64% of psychology findings in top journals cannot be reproduced.

The problem was made worse, Lemaitre said, by funding bodies’ preoccupation with rankings, metrics and impact, and by a failure to reward scientists for correcting the record with meticulous, but unflashy results.

The reliance on peer review for publishing papers and awarding grants allows narcissists, characterised by a Machiavellian ability to manipulate others, to network their way to success.

full article: https://www.theguardian.com/science/2017/jan/20/science-victim-crisis-narcissism-academia

Personally, I think a big part of the problem here in the UK is that most 'science correspondents' have little or zero scientific knowledge. They can't read the papers, only the press releases.