I have to admit that when I read the headline in the Independent today, I cried. Yesterday I had told myself that I wouldn’t get upset about the PACE trial results, especially after seeing the fantastic new trailer for the film What About ME (http://www.whataboutme.biz/) and hearing about the wonderful work that the Whittemore Peterson Institute are doing (http://www.wpinstitute.org/). But it does feel like someone is taking the piss – telling me to “get out and exercise” – because that is the thing I most want in the whole world. I would give my right arm for it. No, I really would. And given that I am a violinist and need my right arm to do what little work I am currently able to, it shows how much I want to have a normal life again.
I know that some people from my previous life (the one where I was healthy) are going to be sniggering at this article and thinking of me and how silly I am that I can’t get well again.
So let me try and explain once and for all why I can’t exercise or even do anything remotely active without feeling like I’m about to die. And no I’m not exaggerating. And no it has nothing to do with tiredness or this so called “fatigue” I keep hearing about. I’m going to explain how I feel from the feet up. Bear in mind this is how I feel all the time, even when at rest but that these symptoms worsen when I am active. I have tingling, freezing cold feet (except at night when the soles of my feet burn so hot that it prevents sleeping) and my legs feel constantly wobbly and tingly. I feel nauseous and my heart seems to beat at random speeds, totally unrelated to what I am doing. I have an enormous gland in my neck that has been swollen for over six months and other painful glands that go up and down in my armpits, groin and neck. My upper spine feels constantly inflamed and I have unbearable pressure in my head. My face and nose are always cold and I get abnormal crawling sensations under the skin in my face and scalp, particularly on the left side. Sometimes I lose the sensation in my face and my left hand. I also suffer from extreme sleep disturbance so my body doesn’t get a lot of respite from all of this. I have had these symptoms for nearly two years. They get worse when I try to be more active.
I would now like to point out that my case of ME is only moderate. So imagine how those who are severely affected must feel. Fatigue does not really come into this illness. My theory is that there is no easy way to describe how we are feeling. Perhaps early on in the illness, a doctor will ask us if we are tired or feeling fatigued. We will probably answer yes, as how on earth can you describe everything that I have above without 1) sounding like a nutter and 2) running out of time in an appointment.
In my opinion the fatal error is to EVER mention the “f” word. Once it is there on your record, you will never be free of it. And so they can treat you for it, ad-infinitum, merrily ignoring all your other symptoms along the way. If I could turn back the clock, I would make sure that word was never put in my medical file.
So how on earth did the PACE trial “prove” that exercise helps us? Well did it….? Let’s take a closer look shall we….
On a basic level here are some flaws that are easily observable on reading the paper:
1. Only 84% of people suffered from post-exertional malaise. This means that nearly 1/5 of participants did not have the cardinal symptom of ME.
2. Also there is a big problem with the trial in that severely affected patients usually score 28-33 on the Chalder fatigue scale. Whereas mildly affected sufferers tend to score about 20 (Jason). By this account we are suppose to believe people on the trial were all severely affected (average score is around 28) and yet the study states: “Our trial had limitations. We excluded patients unable to attend hospital.” This means that severely affected people could not have been enrolled in the trial. It is obvious that at baseline people were over rated on the scale and that this overrating could have led to it look like the scores dropped – when in fact they just rated themselves more accurately. This over rating could have also hidden GET relapses and exacerbations as 33 is a maximum score.
3. Even if patients’ scores did drop – 20 on the Chalder scale is hardly a rating of a healthy person. From this we can conclude that CBT and GET are not remotely curative. Participants of the trial did not resume normal lives following their treatment.
Now here comes my favourite bit of the paper:
“No more than 30% of participants were within normal ranges for both outcomes and only 41% rated themselves as much better or very much better in their overall health.”
So it’s not looking great is it really? But wait a second…. Lets read the next sentence…
“We suggest that these ﬁndings show that either CBT or GET, when added to SMC, is an eﬀective treatment for chronic fatigue syndrome”
Huh? Not quite sure how they got from A to B on this one. I think their idea of an effective treatment is a slightly bizarre one. We must also not forget how data was recorded. Patients were asked how they felt after (in the case of CBT) being given a therapy that is designed to change the way you feel and think about your symptoms. You can’t brainwash someone and then ask them how they feel and get a reliable, objective answer.
But wait, there’s more:
“The PACE ﬁndings can be generalised to patients who also meet alternative diagnostic criteria for chronic fatigue syndrome and myalgic encephalomyelitis but only if fatigue is their main symptom.”
So by their OWN admission, these results cannot be extrapolated to most ME patients, therefore the Independent’s oh so subtle advice to “ME patients” is completely unjustified. I doubt if many of us really sat down and thought about it, would describe “fatigue” as our main issue. Post exertional malaise, yes. Abnormal muscle aches and skin sensations yes. Neurological symptoms, yes. Flu-like symptoms yes. Tiredness, no. We must reject the “f” word and only then might they get the message that our health problems run far deeper.
For some excellent responses to the PACE Trial results see: