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STRIPEYSOCKS BLOG (not part of the book!)



Sometimes there is the simplest of explanations when an announcement doesn't make sense. It's like a fault in a garment; once someone points it out, you wonder how you missed it. And after that you see it all the time!

I have been asked about this proposed figure of 97% recovery from ME in young people, which has been doing the rounds after being aired in the media. Initially of course, I directed people to my blogpost WHAT DO WE KNOW ABOUT SEVERE ME? because in it I had discussed recovery rates, and what might or might not be meant by 'recovery'. I gave quotes from reputable authorities and pointed out that judging recovery means defining what we mean by the word. It's important to put the 'recovery' narrative into perspective.

But there other issues than merely defining our terms. One of them is this: who is claiming that 97% of young people recover? What are their sources? In my experience, it's paediatricians and other healthcare workers who deal with young people.

I am reminded of an occasion when I attended a meeting in connection with the setting up of a clinic. I believe the term CFS was being used, but it may have been CFS/ME. In the general discussion, a paediatrician stated that children did not suffer beyond the age of 16. He was quite confident.

What was the flaw in his claim?

I looked at him: “But as a paediatrician you don't see anyone over the age of 16,” I pointed out. “So how would you know?” And there you have it. A glaring flaw in the 97% claim.

I had to explain to this paediatrician that many relapses occur in young people who have, indeed, become much stronger, but who are not cautioned for the future. They are not advised to rein in if they notice symptoms returning. They may burn the candle at both ends. Believing it's all in the past, they study, shop, socialise, join clubs, deal with all the general tasks of life, till suddenly they find themselves back at home in the care of their parents. Students have had to take a year out from university, or even to leave altogether and consider other ways of studying. It's a horrible shock, it's a blow to their self-esteem, and it's tragic that they weren't given proper advice to begin with.

It has been noted that people generally adjust their idea of what is 'normal' after a long period of illness. As they improve, many youngsters develop a good sense of what they can manage, and are realistic about it; they adjust their lives to the new 'normal'. If asked, they may say they are better, they may appear 'better', but as with 'recovery', that word needs defining so we know what we're talking about. No-one, particularly the adults around them, likes to think that any of these 'recovered' young people might still need to pace themselves. They naturally want to be off having a good time and living life to the full after what tend to be called the 'lost' years. It doesn't have to be considered a great drama to advise them to take a little care if they feel rough, as we all do at times. They will need to test their boundaries, and may make mistakes, needing friends and family to help them pick up the pieces. But that is life. We all have to work with the cards we are dealt. We are all different and there is no absolute norm.

There are also other factors to consider with regard to recovery figures.

I was giving a talk to home tutors and one told the group that a student had asked what would happen if she wasn't recovered enough to take her exams. She had 'encouraged' this student by saying, “Don't worry, you will be.” It was clearly the tutor who found the potential for limitations and disabilities too terrible to contemplate, not the student, who had asked for information. By refusing to engage with the student's question, the tutor unwittingly cut off all discussion about adjustments that can be made for sick or disabled students to take an exam. This is an illustration of how important the attitude of professionals is. What about the issue of pride? Always considered a sin, in biblical terms.

In the Countess of Mar's recent speech at the Royal Society of Medicine, she noted the difficulty that professionals have in adjusting their beliefs:
      Frantz Fanon, the French psychiatrist, philosopher and revolutionary from the middle of the last century wrote: “Sometimes people hold a core belief that is very strong. When they are presented with evidence that works against that belief, the new evidence cannot be accepted.
      It would create a feeling that is extremely uncomfortable, called cognitive dissonance. And because it is so important to protect that core belief, they will rationalise, ignore and even deny anything that doesn’t fit that core belief.”

I think of it as the Galileo effect. Clearly the sun goes round the earth. Whoops. Pride comes before a fall.

Are we still seeing the Galileo effect in the realm of medicine? The more medical professionals who buy into an idea, the more that idea becomes accepted truth. Are we seeing the belief that the child must have recovered from the original illness, and that it couldn't possibly be lasting so long, confuse recovery statistics? If the reality doesn't match expectations, if parents explain that their child is still ill, or becoming worse, this can be put down to another condition, perhaps a psychiatric one. Family after family report this happening to them. The very idea that the child's so-called 'CFS' might still be active is pooh poohed. Does that skew recovery statistics?

Another belief appears to be that The Treatment must work, therefore The Treatment does work. What happens when it doesn't? There are many cases where parents are incorrectly blamed for the child's condition. The fallout of that affects the whole family. Consider this, from FALSE ALLEGATIONS OF CHILD ABUSE IN CASES OF CHILDHOOD ME published by the peer reviewed academic journal Argument and Critique: “a bias would appear to have been introduced into the claimed recovery rates from the management regime of the professional’s choice, whereby blame for treatment ineffectiveness or failure is shifted onto the children and their families.”

Finally, there is the whole 'chronic fatigue' umbrella. Whilst young people are generally resilient and the tendency is for their bodies to fight hard against illness, who, out of those who appear to be genuinely 'recovered', had classic ME in the first place?

Jane Colby