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Telegraph Tomorrow - Exercise and positivity can overcome ME

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charles shepherd

Senior Member
Messages
2,239
University of Oxford news release - this has a midnight embargo on it

CS comment - worth noting the observation from Dr Kimberley Goldsmith: We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term

EMBARGO: Wednesday 28 October 2015, 0001 UK time (US Eastern time: 8pm on 27 Oct 15)

Treatments offer hope for Chronic Fatigue Syndrome (CFS/ME)

Researchers have found that two treatments for Chronic Fatigue Syndrome have long term benefits for people affected by the condition.

The team from Oxford University, King’s College London and Queen Mary University of London were following up patients who took part in a study published in 2011, funded by the Medical Research Council. In that study they looked at four potential treatments for Chronic Fatigue Syndrome (CFS) and found that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) achieved better outcomes than standard medical care (SMC) and adaptive pacing therapy (APT) at one year.

In this study they contacted the people who took part in the original study to find out how they were fairing two and a half years after starting the treatments.

Three quarters of the original trial participants took part in the follow up. It showed that the improvements in fatigue and physical functioning seen at one year in the trial with CBT and GET were maintained in the long-term.

Professor Michael Sharpe from the University of Oxford said: ‘The finding that participants who had cognitive behavioural therapy and graded exercise therapy had maintained their improvement over 2 years after entering the trial, tells us that these treatment can improve the long-term health of people with CFS.’
The team also found that participants who originally had CBT or GET were less likely to have sought additional therapy after the trial than those who originally had standard medical care alone or APT.

Dr Kimberley Goldsmith from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London said: We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term. However as many had received CBT or GET after the trial, it does not tell us that these treatments have as good a long term outcome as CBT and GET.’
There were no significant differences between the four original treatment groups in the number reporting a long-term deterioration in their general health (around 1 in 10 of each group). This showed that there was no evidence that those who received CBT and GET were more likely to worsen in the long term.

Professor Peter White from Queen Mary University of London said: ‘Finding no significant differences in the proportions getting worse over time is a reassurance for those who worry that some of these treatments might make things worse. But it is also a reminder that these treatments do not help everybody, and more research is needed into finding other treatments that help.’

ENDS
Notes to editors
For more information, or to request an interview, please contact the Oxford press office on 01865 270046 or news.office@admin.ox.ac.uk
Chronic fatigue syndrome (CFS) is characterized by a report of fatigue and impaired functioning of at least 6 months duration with no identifiable alternative diagnosis.
Myalgic encephalomyelitis is thought by some to be the same illness, and by others to be a separate disease.
Cognitive behaviour therapy: Help with understanding the illness and coping actively
Graded exercise therapy: Help to gradually increase activity with monitoring
 
Cheshire

Cheshire

Senior Member
Messages
1,129
charles shepherd said:
Dr Kimberley Goldsmith from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London said: We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term. However as many had received CBT or GET after the trial, it does not tell us that these treatments have as good a long term outcome as CBT and GET.’
Click to expand...

Who talked about patients jumping to conclusion?

There were no significant differences between the four original treatment groups in the number reporting a long-term deterioration in their general health (around 1 in 10 of each group). This showed that there was no evidence that those who received CBT and GET were more likely to worsen in the long term.
Click to expand...

So that's the new PACE's standart, we are happy patients who received our treatment didn't worsened.:bang-head:
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
University of Oxford said:
We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term.
Click to expand...
This appears to be the only important info in the press release. All the other information is froth and spin. It appears to mean that there was no difference between treatment groups at follow up. So CBT and GET are no better than doing nothing. Interesting how the telegraph interpreted this to mean that exercise cures the illness. If I've correctly interpreted the small amount of info available then the telegraph headline is fiction, and a total fabrication.
 
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Denise

Senior Member
Messages
1,095
"We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term."

When I read this I interpreted SMC as Science Media Centre.:eek:
Which in a twisted way, made quite a bit of sense...
 
S

Sidereal

Senior Member
Messages
4,856
Interestingly, individuals who originally received CBT and GET maintained improvement in fatigue and physical functioning at follow-up (median 31 months after randomisation; range 24–53), irrespective of whether they received any further treatment. Individuals who received APT or SMC alone displayed improvement in fatigue and physical functioning irrespective of receiving further treatment, such that no difference in outcomes was evident between any of the original treatment groups at long-term follow-up.
Click to expand...

This is what the accompanying editorial in Lancet Psychiatry says. RIP. Null finding.

The media coverage is egregious. Someone should complain.
 
Research 1st

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Sidereal is correct and advertising medical fraud in the UK is illegal.

People should complain.

These newspapers are printing claims of a medical therapy that are fraudulent, as no scientific data exists for the claims being reported.

Patients should not feel dispirited but calmed and assured there is a safety system in place. A GMC licensed medical practitioner is not permitted in private or public to recommend a medical therapy that has no basis of fact of 'working'. If they do, they are breaking the GMC code of conduct.

Safety and quality
  • Take prompt action if you think that patient safety, dignity or comfort is being compromised.
  • Protect and promote the health of patients and the public.
Source: http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp
Click to expand...

Concerned parties can make a legitimate complaint about a UK doctor, including fears of them endangering your health and causing upset and distress in the form of discrimination and fraudulent claims of a therapy being offered to you here, here:

http://www.gmc-uk.org/concerns/23339.asp

Also the foolish statement below is a dangerous lie, that may harm patients in the community and in medical settings (such as emergency medicine) and will definitely increase levels of discrimination, especially in schools where children face being bullied:

Chronic Fatigue Syndrome sufferers can overcome symptoms of ME with positive thinking and exercise'
Oxford University has found ME is not actually a chronic illness

source: http://www.telegraph.co.uk/news/hea...f-ME-with-positive-thinking-and-exercise.html
Click to expand...

In the UK, CFS is classified as a chronic illness by the Department of Health (NHS) and the Department of Work and Pensions (DWP). CFS and ME sufferers disability benefits, should they apply and meet the disability criteria. The DWP also classify POTS (a common condition in ME and CFS) as a potentially life long chronic illness.

What this means, is if a person diagnosed with CFS is harmed, due to actions others take against them (verbal, physical, psychological, sexual abuse) based on discrmination, including if these people are doctors or medical professionals, the CFS sufferers (being told they don't have a chronic illness in the press which influences others) are potentially victims of a hate crime.

http://www.report-it.org.uk/disability_hate_crime1

If a person is injured because of what is written in the press, the newspapers is liable for their injuries.

A disability hate crime in the UK is:

“Any criminal offence which is perceived, by the victim or any other person, to be motivated by a hostility or prejudice based on a person’s disability or perceived disability.”

Source: http://www.report-it.org.uk/disability_hate_crime1
Click to expand...

More information here how to report disability hate to the police in the UK if you feel people are endangering your life by disbelief of your serious medical disease, that may affect your heart, breathing and central nervous system (CFS).

Link here:
http://www.disabilityrightsuk.org/how-we-can-help/independent-living/stop-disability-hate-crime

If you don't feel personaly in danger and feel these article (based on fraud) are simply a case of xenophobia and general discrimiantion there is help how to report it in the UK, here:

https://www.citizensadvice.org.uk/d...discrimination-because-of-religion-or-belief/

Presumably the salespersons want to get taken to court and lose their GMC license to practice medicine, or if it was a journalist who believes what is being distributed in mass media (and they weren't told they lie the themselves) they want to get reported to the press complaints commission.

If you wish to complain about the journalism in the newspaper you read, you can report the article to the press complaints commission:

https://www.ipso.co.uk/IPSO/makeacomplaint.html
 
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duncan

Senior Member
Messages
2,240
Find a UK-based ME/CFS advocacy.

Write verbatim what worldbackwards just wrote.

There is your good, strong response that communicates the message that needs communicating, in a manner that reflects the appropriate outrage and intolerance to the gross injustice this article represents.
 
Y

Yogi

Senior Member
Messages
1,132
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