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by eukaryote 3875 days ago
From what I recall, the result of the PACE trail was a bit of a farce. There were 3 categories of outcome for the patient: no change, better, or worse. Each of these categories contains roughly a third of the subjects. Despite such a glaring failure to produce a useful treatment, the PR spin focused on the third that got better, rather than the third of patients who got worse after the PACE treatment.

Surely this kind of breaks the medical tradition of "first, do no harm". The anger generated by ME patients in the UK was caused by the fact that it was proposed they would lose their benefits if they did not participate on a PACE treatment, a treatment that caused no improvement or made ME patients worse in 66% of the trail subjects.

A more open mind must be taken by researchers when approaching ME as a illness. They must remember they are dealing with subjects that have frequently dismissed as lazy, over-sensitive, and in many cases lying about their symptoms.

Disclaimer: I had ME for 2.5 years about 25 years ago, so I have been subject to family, doctors, friends and even strangers dismissing my muscle pain, blinding headaches, insomnia, continuous cramps and inability to regulate my body temperature as "all in the mind".

I wish anyone reading this who is suffering from ME all my best wishes - I remember clearly how ME feels.

I am now a healthy 45 year old man, who can now play tennis for 4-5 hours continuously without ill effect. There can be a future after ME for all of us if medical researchers continue to search for a solution, rather than classifying it as "all in the mind" as the PACE trail was seemingly intended.

2 comments

>From what I recall, the result of the PACE trail was a bit of a farce. There were 3 categories of outcome for the patient: no change, better, or worse. Each of these categories contains roughly a third of the subjects. Despite such a glaring failure to produce a useful treatment, the PR spin focused on the third that got better, rather than the third of patients who got worse after the PACE treatment.

I'm not sure where you got that info. I just had a look at the 2011 and 2013 papers, and didn't see that. You're implying that treatment had no benefit, but that's definitely not what they found. If you look at the results, you'll see that CBT and GET did result in an improvement in the average scores of patients. It wasn't a huge improvement, but it certainly was an improvement.

I did not imply the treatment had no benefit. I stated that one third got better, one third had no change, and one third got worse. This is not a good result - a third of the participants got worse.

In addition, 13% of the participants on the trial had already recovered before the trail began, but were not excluded.

Finally, the thresholds for being “recovered” demonstrated worse health than the scores required in the first place to demonstrate the severe disability needed to enter the trial. This anomaly meant that some participants could get worse on physical function and fatigue during the trial and still be included in the results as being “recovered.”

“I’m shocked that the Lancet published it,” said Ronald Davis, a well-known geneticist at Stanford University and the director of the scientific advisory board of the Open Medicine Foundation.

“The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review”, added Davis.

>I did not imply the treatment had no benefit. I stated that one third got better, one third had no change, and one third got worse. This is not a good result - a third of the participants got worse.

Do you have a reference for that? Overall, patients got slightly better on average. Even if some got slightly worse, on average there was an overall benefit.

>In addition, 13% of the participants on the trial had already recovered before the trail began, but were not excluded.

That's incorrect. The physical function was just one measure. To be counted as recovered, patients needed to meet other criteria and it would have been impossible for patients to be recovered at baseline. This seems to be a piece of misinformation that is spreading around patient forums. You're better reading the study itself rather than other people's (perhaps flawed) interpretation of it.

> rather than classifying it as "all in the mind" as the PACE trail was seemingly intended.

It's intensely frustrating that ME sufferers dismiss psychiatric illness as "all in the mind". It's hateful, ignorant, stigmatising, and stupid.

Obsessive Compulsive Disorder is "all in the mind", yet it's listed by world health organisation as one of the ten most debilitating illnesses.

By pushing this "it's not in my head" bullshit ME sufferers make it harder for people to get evidence based treatment.

You're wrong about PACE too. http://www.ncbi.nlm.nih.gov/pubmed/26521770

I'm sorry if you took offence at my use of the idiom "all in the mind" - its intended meaning is "imagined" rather than "psychiatric". I am not implying psychiatric illnesses are not real.

Regarding the PACE trail; I was referring to the trail conducted in the UK. About 73% of people with ME do not gain any benefit in symptom relief when CBT is used as a primary intervention.

http://www.meassociation.org.uk/2015/10/press-release-me-ass...

Not a single research believes that CFS is imaginary, even proponents of the cognitive behavioral model of CFS. They say that psychiatric factors influence the illness. Even Wessely himself published a review saying that the immune system was "almost certainly" involved in the etiology of CFS. This "all in your head" accusation is just a strawman.

I think a lot of militant patients incorrectly believe that there is some arbitrary division between mind and body, and that the mind cannot cause physical symptoms (which is, of course, demonstrably false). I think this is caused by a general prejudice against mental illness, as well as a general misunderstanding of how the body works in terms of psychosomatic interactions between mind and body.

"I will argue that ME is simply a belief, the belief that one has an illness called ME..... .I will argue that this line here [overhead slide] represents not the line between low and high cortisol responses [but] the line between real and unreal illness."

Simon Wessely, Microbes, Mental Illness, the Media and ME: The Construction of Disease, 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, April 1994.

Although he may have softened his stance in the past few years, this is fairly representative of Simon Wessely's views during the past 20-25 years.

As I understood it, the similar comment he made in "old bottle, new wine" was referring to the idea that ME is a viral illness when he said that ME is just a belief. He has said in other places that he believes that CFS/ME is a real illness with severe symptoms, as he has done research showing that the immune system is involved.

It could be that he has changed his stance in recent years.