Thursday, February 17, 2011

X-cessive psychobabble

Today has been a sad and upsetting day for ME/CFS patients, the day the PACE trial results from the UK were revealed and shared around the world, to the delight of most that don't understand what ME/CFS is. Just take a look at LA times' and NYT's articles' comments. Some people are saying, hell ya, get them therapy, and these people should go back to work.

L.A. Times article

N.Y. Times article

PACE trials stands for Pacing, graded Activity and Cognitive behavioral therapy: a randomize Evaluation. It was initiated a few years ago with a few millions pounds budget, by psychiatrists that aim at proving that ME/CFS is a psychiatric illness.

They found fatigued patients. They didn't have to meet the latest definition of ME/CFS via the Canadian Consensus Criteria, because that would have skewed the results really bad. They just needed to be fatigued. The used the Oxford Criteria also known as empiric definition.

The ‘Oxford Criteria’ (1990) therefore defined CFS/ME as a syndrome in which:
-there is a definite onset (ie it is not lifelong)
-fatigue is the main symptom
-the fatigue is severe, disabling and affects both physical and mental functioning
-the fatigue has been present for at least six months, during which time it has been present more than 50 per cent of the time
-other symptoms may be present, particularly myalgia, mood and sleep disturbance.

This definition criteria can easily include patients with depression. It has been proven by Dr Leonard Jason from De Paul University. You can watch this 1.5 hours video if you are interested in the topic.

In  contrast, the Canadian Consensus Criteria offers precision in diagnosing real ME/CFS patients via the definition. The cardinal symptom of ME/CFS is "post exertional malaise" (I hate the word malaise, it diminishes the symptoms) which means the patient experience relapse symptoms after exercise, or straining activities (it can include cognitive activity too). You can view the Canadian Consensus document here: 

So the psychiatrists in UK, authors and investigators of the PACE trials, most of whom have conflicts of interest as they are attached one way or another to disability and health insurance companies, picked 640 people with fatigue that lasted for the last 6 months, told them they have ME/CFS and randomized them into 3 groups, CBT (cognitive behavioral therapy), GET (graduated exercise therapy) and pacing of activities. According to their results, exercise and behavioral therapy helps treating the disease. And they went on to tell the whole world about it, just like the 4 papers in the journal Retrovirology calling XMRV pure lab contamination. 

Today the patients as the news spread on CNN, LA Times, NY Times, BBC, and other wires. You see the title like this one all over the web: "Study says behavior and exercise therapy best for treatment of chronic fatigue syndrome",  Us patients know that tomorrow when the doctors will read the news, they will see that as headlines and will refuse testing, prescriptions to patients that are really sick. 

The PACE trial did not study the sickest of the sick ME/CFS patients out there, the ones that can't care for themselves, the ones that can barely make it surviving, the ones that even stepping out of their doorstep will throw them in a relapse that may last weeks, perhaps months. For the regular person, it is hard to understand that there can be an illness that if you exercise, push your physical or even mental limits, you get worse and "pay" for it afterwards. 

PACE aimed at vilify patients for declaring themselves sick and unable to work and claim disability. PACE aimed at putting the fault on the patients instead of listening to them and researching bio-medical causes for their illness.  PACE is aimed at reducing the ever increasing costs of health care by refusing treatments of a whole disease that affects millions around the world. That disease happens to have vague symptoms, and taken one at a time, may not seem "that bad". However, if a specialist sees patients over and over,  he will be able to find patterns in the illness, and definitive lab results that will tell them that the immune system the endocrine system and the autonomic nervous system are dysregulated and causing lots of damage for the patients. 

Psychiatrists will only see that the patient is lazy- or have faulty coping mechanism, or is depressed. Perhaps they will be given a bonus for proving that ME/CFS is not a physical illness. It is only sad that the receiving hand is patients that have lost a good job, and a good life, or worse, haven't even had a chance at living their adult lives the way most of the population live it. 

In the 1980's, we had an HIV epidemics. The research was slow and government even slower to fund research into HIV because a group of men were labelled as being on the fringe of society. They spoke up and protested and eventually, they got treatment, however at high human cost. 

What the general population doesn't know is... there was likely another epidemic brewing in the 1980's, proven by the Incline Village, Nevada cohort and Lyndonville NY cohort. Some 25-30 years later, a fearless researcher called Judy Mikovits finds a retrovirus called XMRV in over 98% of a ME/CFS cohort, which is still refuted in UK as laboratory contamination. 

Patients around the world wonder... what is the future for them? Will the CDC, and their government  adopt the PACE trial results and recommends doctors around the world to stop testing patients for infectious causes that present with fatigue? Will the governments and insurance companies adopt PACE trial to get away from huge payments in disability for patients that can't work, instead of paying into research? Will more patients go homeless and without health care due to this research? 

It is scary times. Science VS money. Which one? 

To my knowledge this is the illness that receives the most discrimination, and it's not even recognized as such, because people shut down when you mention these 3 words: chronic fatigue syndrome. 


  1. You are so right - thank you for taking the effort to write. I have myalgic encephalomyelitis (ME, referred to as "CFS" by some) - yet I only sleep about 7 hours a night, about the same as I always did. And I push myself every day to do as much as I can. Yet the thick fog in my head, and my heavy legs, make it impossible for me to work - often I can barely think straight or put one foot in front of the other. Impossible to describe to a well person what it feels like to be sick day after day after day after day....

  2. Thanks for this informative post. It's all so infuriating. I have to continue to believe that science will prevail in the end.

  3. Good post, Kati. Thanks. Missed the Jason video before. Hope to watch it sometime soon.

  4. Good words Kati! Don't give up hope, dear fellow patients and supporters.

    Both Judy Mikovits and Annette Whittemore said in their remarks to the Gordon Medical Group in CA last Jan. 17th, that "soon the politics will be over". I believe them. The science will win out. The governments are just trying these terrible delay tactics while they get their heads screwed on straight.

    Never give up!