PACE Tripe… sorry I mean Trial

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:

http://www.afme.org.uk/news.asp?newsid=1047

http://www.meassociation.org.uk/?p=4607

http://www.investinme.org/IIME%20Statement%202011-02-01.htm

http://www.meactionuk.org.uk/magical-medicine.pdf

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XMRV Bloggerama Day

I have been ill since April 2009. Prior to this time I was an extremely active and busy person with a life I absolutely loved. I caught a flu like virus following a walking holiday and have never felt well since. I have been from doctor to doctor and not one has been able to give me a definitive answer to what is wrong with me. I have been told that I have “Chronic Fatigue Syndrome” which in my opinion is a highly unhelpful diagnosis which doesn’t really mean anything. I have done research into my condition and it seems that the illness that seems to match the symptoms I have (flu-like feeling, constant head pressure, sore throats, swollen glands, weakness, dizzyness and pain in my spine) is ME.

When I first started researching the illness it seemed that there had been a fair amount of research done but either 1. it had been ignored or 2. not come to any solid conclusion. On 9th October 2009, I received a text from my father who had just heard on the BBC Radio 4 morning news that “XMRV virus has been linked with M. Ever since then, it still continues to be the most talked about piece of ME research, despite controversy in the press.

In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

This research DESERVES more time and money spent on it. It is important to find out why such a high percentage of ME patients are testing positive for XMRV. I do not yet know my XMRV status as I am waiting for my result that was part of a study.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987

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