Please PACE your SILLINESS

The PACE Trial:

As you know this is a trial where the outcome has been decided first, all that needs to happen now is do the survey and write up the report.

A NICE job for one or one and a half million pounds sterling wouldn’t you think?

The interesting thing is, it is called PACE, and I don’t know how long it took them to come up with this fantastic name, but pacing won’t be the answer. CBT and GET will be.

Now just a few basics about this trial:

They have no idea what DNA (Did Not Attend) really means.

“CBT is based upon the idea of fear of avoidance.”

“GET will be based on the illness model of deconditioning and exercise intolerance.”

As you know, most ME patients are actually, or I should say, were fit and active before they fell ill.

I for example have been doing sports as long as I can remember, but now I seem to be afraid to do my running or play tennis or so according to these CBT fanatics.

And these people claim to know something about ME. But please read on, they have a few more rabbits and other surprises in their big hat.

As you know, GET means Graded Exercise Therapy, or gradually increasing your exercise regime, gradually might actually mean an increase of 30%.

So not really gradually. Furthermore, illness model of deconditioning is psychobabble for lazy patients who don’t want to exercise and so their stamina has decreased.

Exercise intolerance means that you have a medical problem which prevents you from doing exercise. So the two contradict each other.

Either you are lazy and you don't want to exercise or you can’t because of a medical problem.

But write it in psychobabble and no one will notice that it can't be both at the same time.

Would I be able to participate in this trial?

No, of course not. Patients who really have ME, and who are waiting for proper therapy since Dr Ramsay first described this Illness in 1955, are obviously excluded.

On what base?

Well, if you want to participate you have to be able to do the following test at the baseline visit as they call it:

“The six-minute walking test.”

And patients with SEVERE ME are lucky if they can walk to the toilet and keep some form of independence.

So people like me would NOT even get through the door.

Just to give you an idea who is running this trial:

The top dog is working for a “Department of Psychological Medicine”.

The second in command is working for a “Psychological Medicine and Symptoms Research Group” (run by the infamous CBT professor).

The third person you can find at the “Academic Department of Psychological Medicine”.

Number four is based at the “PACE Trial Coordinating Centre,” which is part of the “Centre for Psychiatry”.

Their “focus of research is on social and epidemiological psychiatry.”

And the last man on the leader board is working at the “Mental Health & Neuroscience Clinical Trials Unit (MH&N CTU), Institute of Psychiatry”.

If you look the top dog up, you will find on the site of the department where he works that:

"The focus of the Centre for Psychiatry’s research is on social and epidemiological psychiatry."

Now please keep in mind that ME is a NEUROLOGICAL disorder, see the WHO (World Health Organisation) ICD (International Classification of Diseases) book.

I have now send him a letter, asking if he would be willing to lead my NICEGUIDELINES BLOG Trial about RATT (Ruptured Achilles Tendon Therapy), as I think this study should be done by a psychiatric department.

Don't you think??

Further interesting gobbledygook is found in the study protocol or trial manifesto:

“Patients who are considered by the RN (the research nurse), in discussion with their centre leader, to be unable to do one or more of the trial therapies or to complete all trial measures or for whom participation in the PACE trial would be inappropriate to their clinical needs (e.g. someone with significant post-traumatic stress disorder)” are not allowed to take part.

I thought this trial was about ME, but apparently they can’t even diagnose ME properly and distinguish it from PTSD (post-traumatic stress disorder).

So, a really great team.

But they have more rabbits in their big hat.

How about this one for example:

“A recent study has suggested that there is little difference in the cost-effectiveness of CBT and GET for chronic fatigue in primary care, and both were more expensive and more effective than standard care [20].

However, only one-third of patients in this study had CFS/ME.”

The name of the study: “Cost-effectiveness of cognitive behavioural therapy, graded exercise and usual care for patients with chronic fatigue in primary care.”

This study was run by a guy (?? Psychiatrist) from the "Institute of Psychiatry, King's College London, UK"; and that is you guessed it right, the CBT KINGDOM.

Oh, this brilliant study was published in: “Psychological Medicine 2004, 34:1-9.”

So let me propose a study about patients with a ruptured Achilles tendon, and then I will see what is better, the conservative approach, the 6-weeks in plaster or an operation.

I publish my report, which is then used as one of the reports to say that RATT (Ruptured Achilles Tendon Therapy) treatment is great and cost-effective. Even though it is more expensive.

HOWEVER, someone from the same institute, where I work, then starts another study and writes down that:

“only one-third of patients in this (my) study had” actually a ruptured Achilles tendon. So I only had the diagnosis right in ONE out of THREE patients.

Would you then come to me, if you had an Achilles tendon problem and say, look, this is the best guy in the business, working in the best centre in the world??

And that is what I mean, when I say that critical reading is NOT something you are learned to do as a doctor, and even the editor of this journal published a paper that did NOT even get the diagnosis right.

SO WHAT IS THE POINT IN PUBLISHING SUCH AN ABYSMAL STUDY AND BELIEVING THE RESULTS?????

Either the editor was asleep or he doesn’t know what critical reading is.

But isn’t that his job??

As patients we have been saying for years, that the psycho people from the CBT KINGDOM have no idea what ME is and that they can’t diagnose it.

Not only do they think it is PTSD, even a first year medical student knows the difference, but now they publicly state that, only in ONE in THREE patients with ME have they got the diagnosis right.

So please Mr NICE, was this what you called evidence based CBT for ME? I must say, you’ve just made my day.

What a whole lot of baloney, and you get paid to write this and report about it as well. Must be really great.

What would you say if David Beckham scored ONE out of every THREE penalty kicks as a manager or as a supporter of that club???

Would you be cheering him on and begging him to continue, or would you say, we get someone who can actually do the job properly???