Propaganda

prop·a·gan·da/ˌpräpəˈgandə/

Noun:

Information, esp. of a biased or misleading nature, used to promote or publicize a particular political cause or point of view. The dissemination of such information as a political strategy

This week, once again, the psych lobby of the UK has published a paper aiming at promoting their views, promoting psychiatry very inappropriately and continue the arrogant monopoly over politics and health policy. Here is the skinny:

On August 1st 2012, McCrone et al. publish this paper. Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis. The title sounds pretty benign. However just reading the abstract makes every patients with MECFS shudder in disgust. 

Abstract Top

Background

The PACE trial compared the effectiveness of adding adaptive pacing therapy (APT), cognitive behaviour therapy (CBT), or graded exercise therapy (GET), to specialist medical care (SMC) for patients with chronic fatigue syndrome. This paper reports the relative cost-effectiveness of these treatments in terms of quality adjusted life years (QALYs) and improvements in fatigue and physical function.

Methods

Resource use was measured and costs calculated. Healthcare and societal costs (healthcare plus lost production and unpaid informal care) were combined with QALYs gained, and changes in fatigue and disability; incremental cost-effectiveness ratios (ICERs) were computed.

Results

SMC patients had significantly lower healthcare costs than those receiving APT, CBT and GET. If society is willing to value a QALY at £30,000 there is a 62.7% likelihood that CBT is the most cost-effective therapy, a 26.8% likelihood that GET is most cost effective, 2.6% that APT is most cost-effective and 7.9% that SMC alone is most cost-effective. Compared to SMC alone, the incremental healthcare cost per QALY was £18,374 for CBT, £23,615 for GET and £55,235 for APT. From a societal perspective CBT has a 59.5% likelihood of being the most cost-effective, GET 34.8%, APT 0.2% and SMC alone 5.5%. CBT and GET dominated SMC, while APT had a cost per QALY of £127,047. ICERs using reductions in fatigue and disability as outcomes largely mirrored these findings.

Conclusions

Comparing the four treatments using a health care perspective, CBT had the greatest probability of being the most cost-effective followed by GET. APT had a lower probability of being the most cost-effective option than SMC alone. The relative cost-effectiveness was even greater from a societal perspective as additional cost savings due to reduced need for informal care were likely.

There are many many wrong with this paper. First they assume that their  original paper published in The Lancet, was flawless and accurate. It was not the case. There were many, many flaws, starting with the fact that their cohort consisted of depressed and tired patients, not patients with ME who have mitochondrial dysfuntion, immune dysregulation and autonomic immune system dysfunction just to name a few. They did not include any patients who couldn't make it to the hospital for testing. They changed the rules in the midst of the trial namely they lowered the bar when it came to what value was interpreted as normal range of 6 minutes exercise test, so more patients could be included in the normal category, making their trial successful in proving that CBT and GET were deemed the only treatments for ME/CFS. 

They completely disregarded the biology of our illness, the work of Dr Peterson, Klimas, Kogelnik, Mella and Fluge, and the like, to only focus on cognitive behavioral therapy as a treatment of ME/CFS and not as a coping method. 

So now they carry on with their PACE paper, taking it a step further and claiming that CBT is the most cost effective option to treat all these poor UK patients. Never mind that patients who are currently on their own have learnt what pacing means and apply it (for free) in their day to day life because there are no other options in the UK. They just want to land a big fat contract for all psychiatrists in the UK to be the only physicians to treat patients with ME/CFS and most of all retain monopoly. 

Moreover, they are making sure that their work is known around the world which is the propaganda aspect that is so disturbing for all patients with ME around the world. They are sharing with the world, telling our governments and physicians how to treat us. Patients, they can't be fooled with this little game anymore. 

Ah yeah I almost forgot. Conflicts of interests? They listed just a few of them on the paper:

Competing interests: PDW has done voluntary and paid consultancy work for the United Kingdom Departments of Health and Work and Pensions and Swiss Re (a reinsurance company), and led a randomised controlled trial about graded exercise therapy funded by the Linbury Trust. TC has received royalties from Sheldon Press and Constable and Robinson. MS has done voluntary and paid consultancy work for the United Kingdom government, has done consultancy work for the insurance company Aegon and has received royalties from Oxford University Press. PM, ALJ, KAG, and MK declare that they have no conflicts of interests. This does not alter the authors' adherence to all the PLoS ONE policies on sharing data and materials.

 What they forget to mention is that there are secret files kept in the UK and I can bet that quite a few of them authors have their name listed in these secret files which are not to be shared until 2070. Their relationship to  UK Nazi psychiatrist Simon Wessely is not mentioned and whether he has participated in any way, or coerced anybody in writing this paper. 

And so where did the news of the so called proven treatments spread? Everywhere. The PACE trial and its subsequent papers are a living proof that bad science can move along and create harm everywhere. It prevents governments to put money into sound biomedical research, prevents physicians to move beyond psychiatry with ME patients and prevents patients to get treatments that they need. 

What needs to happen? In my opinion we need physicians and those that support us, patient organizations, IACFSME to call them on their paper. We need a stop to that propaganda which has been going on for decades. You'd think they gave up on us but there is too much vested interest out there. Money. Cost to society. Cost to insurance companies. It's all a big puzzle that is so darn hard to dismantle.

That said, yesterday it was announced that Dr Bill Reeves, the US alter ego of Simon Wessely in the UK, who was at the head of the CDC CFS program for many many years, has suddenly died of a heart attack. There will be no sympathy from me. He has done plenty of damage in the US and around the world as well.