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Telegraph: Exercise can help chronic fatigue syndrome, study shows

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NelliePledge

Senior Member
Messages
807
slysaint said:
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Asalah Achterberg 23 Jun 2017 4:38PM
If Ms Sarah Knapton is sincerely interested in this topic, I suggest she takes a look at the journalistic efforts of DrPh David Tuller. He will show how this kind of research has been widely debunked by true scientists.

Graded exercise therapy has not been shown to help. In fact, the results are inflated by lax entrance criteria, shoddy protocols, and no objective measures. Moreover, many patients have gotten worse, not better. Often irrevocably, losing the little bit of quality of life they had left.

This completely uncritical article does more harm than good.

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helen oliver 23 Jun 2017 11:33AM
I am lost for words. You publish this and yet there was no mention in the UK press of the International conference organised by the charity InvestinME reporting on recent amazing advances in research for M.E (Stanford Prof Ron Davis amongst them). There is bias in reporting on M.E in the UK. Norway is running trials on a drug that is already showing positive results. This illness is in the blood. My housebound 27 yr old once fit, energetic fully employed, traveling, passionate for the outdoors daughter was seen by a leading ME CFS psychiatrist in London who has written in her notes that there is nothing wrong with her head/mind. He tried hard to find it!. This terrible reporting is devastating for UK ME patients and needs to stop."

"Jules Dub 23 Jun 2017 10:59AM
This is the kind of substandard article, which causes so much damage to a person who is affected by ME. Further causing them to have relationship breakdowns, with families/spouses/friends and (if they're lucky enough to work) colleagues and employers.

You have produced an article which is not accurate, you have not fully researched what you have shared, with an air of authority, as 'Science Editor' how totally unprofessional of you, how unethical of the Telegraph to allow it to be included in their newspaper.

Do you have the first clue the psychological abuse you are causing, printing these sensationalist articles, at the expense of the wellbeing of chronically ill and disabled people?

People deserve to be given ALL of the facts, not a 1 sided argument, which follows the rhetoric of people who know that this is 'bad science', the whole trial was seriously flawed, there is still ongoing dispute from researchers, scientists, specialists."

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Mark Harper 23 Jun 2017 9:46AM
This just seems to be the same old stuff from the heavily-criticised PACE trial, which also claimed marginal benefits from graded exercise therapy for sufferers from ME/CFS. In the USA, ME/CFS has been renamed systemic exertion intolerance disease (SEID) - the clue's in the name, exertion is exactly what ME/CFS sufferers can't tolerate! Trying to make sufferers increase their exertion levels willy-nilly is dangerous and could do real harm."

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Stinky Feet 23 Jun 2017 8:46AM
This is almost getting comical. Queen Mary are so up to their eyes in it they are still trying to push this. No doubt, just as the PACE trial was, GETSET will also be de-bunked with the authors clinging onto what's left of their careers. Graded exercise is harmful, the US are strides ahead in condemning this with the NIH now funding proper science. Come on UK, catch up."

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Madeline Scott 23 Jun 2017 1:15AM
How is this study different from the one published in 2015 - widely and internationally discredited, subject to an FOI request which showed the data had been misrecorded and misinterpreted, which QMUL spent £200 000 trying to suppress, which the MEA rightly continue to lobby the Lancet to retract, and which was reported in this newspaper ... in a manner which caused a large number of upheld complaints to Press Standards?!

It's just that on the face of it, it does seem to be entirely the same report, repeated. Why?"

Jules Dub 23 Jun 2017 11:23AM
Lazy journalism.... copied article from 2013 Pyschology Today; just scan the comments, on that article, and you can clearly see why the ME community/ME Sufferers, are so angry & frustrated, about such a damaging piece, 4 years on, being shared again as 'factual news'!

https://www.psychologytoday.com/blog/sleep-newzzz/201303/exercise-and-cbt-can-help-chronic-fatigue
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Excellent contributions to the resistance from these folks
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Jonathan Edwards said:
I suspect it is there because the PACE propaganda machine has been put into overdrive owing to certain people getting into a bit of a blue funk.
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Agree entirely. I think they continue to set themselves up for their own fall. Tiny numbers. And 'can be helped' perpetuates their blind spot that some groups, outside their studies but inside the standardised treatment demographic, 'can be harmed'. The same fundamental blind-spot mindset that pervades PACE and deludes them into thinking they are real scientists.

They are leaving their own hard copy (as good as) evidence trail a mile wide - bless them!
 
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lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
Barry53 said:
Agree entirely. I think they continue to set themselves up for their own fall. Tiny numbers. And 'can be helped' perpetuates their blind spot that some groups, outside their studies but inside the standardised treatment demographic, 'can be harmed'. The same fundamental blind-spot mindset that pervades PACE and deludes them into thinking they are real scientists.

They are leaving their own hard copy (as good as) evidence trail a mile wide - bless them!
Click to expand...
this makes me so mad and so sad at the same time... it's so hard to believe that there´s people who's ready to destroy our lives, the lives of the weak for financial gain and to keep their status... it really is a very hostile world to live in. But we will prevail, one day we'll thell our children and the children of out children about the long gone injustices of the past
 
P

Pike

Messages
9
Yesterday Jim Shannon an MP from the DUP (an extremist group from N.Ireland that has links to protestant paramilitaries) asked the British Minister for Health the following question:

To ask the Secretary of State for Health, what steps his Department is taking to encourage people with chronic fatigue syndrome to exercise each day.

Below is the reply from Steve Brine MP Under Secretary of State for Health:

In 2007 the National Institute for Health and Care Excellence (NICE) produced the best practice clinical guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. The guideline, last reviewed in 2013, sets out best practice on the diagnosis, treatment care and support of children and adults with CFS/ME and supports local National Health Service commissioners and clinicians in the delivery of services.

The NICE guideline makes recommendations on the use of Graded Exercise Therapy (GET) in patients mildly or moderately affected by CFS/ME. GET is a structured exercise programme designed to gradually increase how long someone can carry out a physical activity. It should be tailored to a person's current level of activities and should be delivered only by a suitably trained GET therapist with experience in CFS/ME under appropriate clinical supervision. The guideline also acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. The guideline can be found at the following link:

www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-pdf-975505810885

To ensure its recommendations reflect the latest available evidence, NICE is currently reviewing its guidance to see if an update is required. A decision is expected shortly.


I have tried all of the approved NICE therapies and they have made my illness so much worse. My local ME support group carried out a survey with our local NHS Healthwatch the results showed the following:

CBT 12% said it helped them better manage their illness - 18% said it made their illness less maneagable

Graded Exercise Therapy 6% said it helped - 40% said it made their illness less maneagable.


I would urge all ME support groups/medical charities to get involved in the coming consultation by NICE.

As former Labour MP Dr.Ian Gibson says in his recent book,'Science, Politics and ME':

''Now is the time to encourage patient groups to take up the challenges. It's time to question those who run our health services and, if necessary, replace them with people who know what they are talking about.''


Every 2 months NICE holds public Question Time events where members of the public can go along and put senior members of NICE on the spot. Members of the ME community need to start attending these types of events.

I have managed to steer my local ME support group to start the process of engaging with our local Clinical Commissioning Group about the health inequalities facing people with ME. From there we will move on to lobbying local councils. Any progress is a win as they are no services for ME patients in my area.

Keep Fighting!
 
Large Donner

Large Donner

Senior Member
Messages
866
I'm pretty sure these kind of articles also get into papers simply for the click count and the editors and the journalists who write them very much know so.

Hard copy newspapers are dead and so the newspaper industry is left trying to incite people online with one fake paradigm after another in the hope that they can get a meme running.

The more controversial the better, it probably also brings in advertising revenue and counts towards the "sales" figures keeping the editor and the journalists in a job. Of course having the SMC doesn't help our cause but it is like gold to the online newspapers who can sit in a comfy office or even at home being spoon fed information for which they have to take zero responsibility. I'm pretty sure by now they have a list of "controversial" topics that they do on a cycle just to play the same lazy game over and over again.

Otherwise why would they do so many stories in so many subjects that are usually taken apart in the comment section with hard evidence and facts by hundreds of people over and over again.

Modern journalism is so often now just the "story around the story", rather than an evidence based investigation.
 
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Valentijn

Senior Member
Messages
15,786
Pike said:
Yesterday Jim Shannon an MP from the DUP (an extremist group from N.Ireland that has links to protestant paramilitaries) asked the British Minister for Health the following question:

To ask the Secretary of State for Health, what steps his Department is taking to encourage people with chronic fatigue syndrome to exercise each day.
Click to expand...
What's the source for this?
 
Rvanson

Rvanson

Senior Member
Messages
312
Location
USA
lauluce said:
this makes me so mad and so sad at the same time... it's so hard to believe that there´s people who's ready to destroy our lives, the lives of the weak for financial gain and to keep their status... it really is a very hostile world to live in. But we will prevail, one day we'll thell our children and the children of out children about the long gone injustices of the past
Click to expand...

What children are you speaking of? I never had any children. Of course, I am a man, so no one cares.
 
lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
Rvanson said:
Two of them, actually. When I die they will get my assets, not their parents, who have treated me unkindly, to
say the least. All I ask in return is to be buried, not incinerated, as my sis-in-laws kinfolk do to their deceased.
Click to expand...
I have son... he is what I leave to this world, for I cannot leave anything else, all my energy goes to help him reach his goals
 
lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
Rvanson said:
Two of them, actually. When I die they will get my assets, not their parents, who have treated me unkindly, to
say the least. All I ask in return is to be buried, not incinerated, as my sis-in-laws kinfolk do to their deceased.
Click to expand...
I don't know what I want in that regard... I wish my body could be studied once I die, but I think it's unlikely that a ME researcher could have access to it, as I live in Argentina, where no such research is made. Sooo.... now that I thnk about it, I'd like my vody to be cremated and scatered on some wild area, so that the matter of this failing body can at least be part of something functional after being assimilated by living organisms
 
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