Daily Telegraph: It’s time for doctors to apologise to their ME patients (Charles Shepherd)

[charles shepherd]

I have been working away for three days - so am only just catching up with DT events!

Firstly, many thanks for all the kind comments about my article - which is a follow up to the formal complaint that was made by the MEA to the Daily Telegraph in relation to their coverage of the latest analysis of the PACE trial results.

Secondly, I understand that the Independent Press Standards Organisation (IPSO) will be making a public statement later in the week - or next week - on the various strands to our complaint.

Thirdly, people are quite rightly pointing out that the symptom list that accompanies the article should have included post-exertional malaise and orthostatic intolerance.
Unfortunately, the DT did not used the symptom list I provided, as included below - which does include post exertional malaise and orthostatic intolerance!

Fourthly, there was a lot more that I wanted to say in an article that is aimed at informing the general DT readership about ME/CFS. However, I had a maximum word count of 750 words. I managed to extend this to 850 words - but that is as far as I could go.

Fifthly, the MEA letter to Lancet Psychiatry on the PACE trial analysis has now been accepted for publication.

This is the 'Key Facts' box was sent to accompany the article:



ME/CFS: KEY FACTS
Affects around 250,000 adults, adolescents and children of all social classes in the UK
Commonest cause of long term sickness absence from school
Often follows a viral infection and produces:

• Exercise-induced muscle fatigue and weakness

• Cognitive dysfunction - problems with memory, concentration, attention span

• On-going flu-like symptoms with sore throats, tender glands and poor temperature control

• Orthostatic intolerance - problems with maintaining upright posture - and poor balance control

• Unrefreshing sleep

• Post-exertional malaise and symptom exacerbation following exercise

• Fluctuating and variable level of symptoms

Diagnosis has to be made on the clinical history - there is no test for ME/CFS

 

[Keela Too]

Well we all shared it like mad and at one point I think it reached 3rd most shared article... so hopefully lots of people read it. Good move, well played I think. Thank you.

 

[SOC]

Unfortunately, the DT did not used the symptom list I provided, as included below - which does include post exertional malaise and orthostatic intolerance!

I wonder what logic made them eliminate the most debilitating as well as testable symptoms, particularly the single unique identifying symptom of the illness. As an editor, why would you go through the symptom list of an illness you know nothing about and strikeout some of the symptoms arbitrarily? Why would it even occur to you to do that? And why those symptoms and not others? It makes no sense from any perspective I can see. Very odd....

 

[chipmunk1]

If this did actually happen, then under the current model would the heart attack patient be told to re-examine their illness beliefs in order to restart the heart?

in theory yes, that's what they would like to do. In practice they won't do or admit it because even they realise that sounds plain nuts and could open the doors for litigation, lead to problems with the medical boards etc.

If they subsequently died, would this be viewed as a result of their recalcitrance and lack of Motivation?

yes, at least partially but again, they wouldn't admit this in public.

What would be the secondary gains?

Not having to face your emotional conflicts.

 

[chipmunk1]

BPS mantra - disease is body+mind+social ....

.. but mind>social>body ...

... therefore mind is what matters.

The BPS approach is only a hypothetical framework construct. Its not reality.

Bio-Psycho-Social

 

[TiredSam]

If they subsequently died, would this be viewed as a result of their recalcitrance and lack of motivation? What would be the secondary gains?

They would be able to have "I told you I was ill" inscribed on their gravestone. There's simply no helping some people.

 

[charles shepherd]

IPSO/Independent Press Standards Organisation website ruling on MEA complaints relating to the Daily Telegraph coverage of the latest analysis of the PACE trial results:

https://www.ipso.co.uk/IPSO/rulings/resolution-statements/detail.html?id=59

 

[Dolphin]

Well we all shared it like mad and at one point I think it reached 3rd most shared article... so hopefully lots of people read it. Good move, well played I think. Thank you.

Small correction: it reached second. I think Russell Fleming @Firestormmer on Twitter posted a screenshot on Twitter.

ETA:

https://twitter.com/i/web/status/674170832407654401

 

[alex3619]

My gosh, CFS is not a chronic condition? When its part of the definitional requirement? Bizarre comment.

IPSO/Independent Press Standards Organisation website ruling on MEA complaints relating to the Daily Telegraph coverage of the latest analysis of the PACE trial results:

https://www.ipso.co.uk/IPSO/rulings/resolution-statements/detail.html?id=59

 

[Sean]

My gosh, CFS is not a chronic condition? When its part of the definitional requirement? Bizarre comment.

You'd think the hint was in the name, wouldn't you? The name the psychs prefer and foisted upon us.

No pleasing some people, huh?

 

[Keela Too]

Ah @Dolphin That's brilliant! How did I miss that!

 

[PhoenixDown]

Just come across this article also in the Telegraph http://www.telegraph.co.uk/news/hea...gue-Syndrome-away.-Im-the-terrible-proof.html thought it was worth mentioning.

Oxford research claiming exercise and positive thinking can treat ME may help some people, but the rest of us are still waiting to be taken seriously

You see, because CFS is not properly understood, there are legions of people out there who will tell you that we are making everything up. They'll say it's all in our heads, all a delusion; that we could get better any time if we just got our minds right. These people will seize upon the study's conclusion that CFS is "not a chronic illness" and that sufferers "can overcome symptoms by increasing exercise and thinking positively."

That might be true for some people, but not for me. I attend sessions at my local Chronic Fatigue unit tp undergo both treatments used in the research, and have seen very limited results over the last 12 months. It is incredibly frustrating to be told over and over by therapists that that best way to recover is to be up and moving about. If only we could!

The Telegraph seems schizophrenic with it's stance on M.E http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html one minute it's mental the next minute it's physical.

Interestingly Michael Sharpe admits we're not dealing with just one illness:

Yesterday Prof Michael Sharpe, the study author, of Oxford University, said that it was difficult to find an umbrella cure for CFS or ME because it was likely to encompass several illnesses with different causes.

“It’s probably not all the same thing,” he said. “It’s quite likely that within that there is a range of different causes. Nobody has really been able to pin down a way of dividing it up.”

Also of note was the use of the term SEID

The illness was first diagnosed in the 19th century as neurasthenia, but has been given many other names since including CFS, myalgic encephalomyelitis (ME), system exertion intolerance disease and Epstein-Barr virus. Suggestions about the cause have ranged from infections, gut bacteria, stress, depression, immune problems, trauma, environmental toxins or allergies.