Out of the Blue

Well, I seem to have gone into PEM at the moment – due to too much blogging amongst other things. Fortunately I have a post for ME Awareness Month which I prepared earlier. In it, I have tried to describe how it can feel to be suddenly stricken down with this devastating condition. Please take a few minutes to read it, especially if you know very little about ME. It is not an easy illness to understand unless you have it yourself or are close to someone who does – and even then it can be bewildering. I have tried to open a small window on the experience of trying to adjust to this unwelcome visitor. (And if you’ve been wondering what PEM is, you’re about to find out…)

One day you start feeling ill. You don’t think very much about it at first. It’s just a bug and bugs go away, don’t they? But at the end of a week you’re not feeling any better. You wonder how long this is going to take. You’re getting a bit alarmed.

At the end of a fortnight, you’re positively worried. You have to phone work yet again to tell them you’re still not well. There’s a growing pressure to explain yourself but you’re just as baffled as everyone else. Your body’s supposed to repair itself, so why’s it not happening?

You also have to explain yourself to your family. They want to know when you’ll be well again. There are things to do that you can’t put on hold forever. Could you give them some idea of when you’ll be up to speed again? This illness of yours is getting inconvenient.

So you go to the doctor, hoping that he will know, but he doesn’t seem to have any more idea than you do. He gives you a sick note but even that seems grudging. Even he seems to think you ought to be fixing yourself by now. But isn’t that his job?

You try to start doing more – but the more you do, the worse you feel. You’re weak and in pain and something feels poisoned inside you. You’re starting to think that something is seriously wrong. Continue reading “Out of the Blue”

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Closing the Door on Freedom

OK, here’s my take on the Freedom of Information Refusal Notice which came out a couple of days ago, not to be confused with the Tribunal outcome which (as I write) is expected imminently. Apologies for the fact that it’s about twice as long as it should be but I now have brain fog so I don’t have the intellect to edit it down! If you manage to read it, I hope you find it of interest. Me, I’m going to get some sleep….

The latest PACE Trial Freedom of Information Refusal Notice causes particular concern, not only for the PACE Trial and its implications for the future prospects of people with ME/CFS, but also for the Freedom of Information Act itself – and even for freedom of speech. The Notice incorporates twelve pages of repetitive arguments from QMUL (Queen Mary University of London, home of the PACE Trial) and three pages of what seem to me to be concise and clearly argued response from ‘the complainant’ (i.e. the guy who has made the request for information). Unfortunately, the Commissioner then goes on to reject the latter in favour of the former, apparently believing every word that QMUL have told him, i.e. that patients have launched a concerted campaign to discredit the PACE Trial by submitting a burdensome number of FOI requests in the desperate hope of finding something wrong with it and in the meantime bringing Lead PACE Investigator Prof Peter White and his staff to their knees under the resultant administrative load so that they aren’t able to do any more of their vital research. Or something like that. Their evidence is not so much a linear argument as a trip several times round the houses in the hope that if they say the same things often enough, some of them will eventually convince the Commissioner. Unfortunately, this strategy appears to have been successful.

The information the complainant requested relates to the data from the step test, an objective outcome measure which went unreported in the original PACE report but appeared in the form of a small scale graph in an appendix to one of the follow up studies. Continue reading “Closing the Door on Freedom”

Make Sure We Speak

After a difficult few weeks in the world of ME advocacy, it’s been really heartening to see the new critique of the PACE trial and accompanying editorial on the Sense About Science USA/ American Statistical Association website. After 7000 words of searing analysis, Rebecca Goldin concludes that the flaws in the study design “were enough to doom its results from the start”, while Trevor Butterworth’s editorial pronounces “a terminal prognosis” on the study. As far as patients are concerned, this demise cannot come too soon – and it remains to be seen if the British media, who have uncritically lauded the study on so many occasions, will consider this latest development to be worth reporting.

Nevertheless, it is encouraging for patients to receive such clear validation of what we have been saying for so long from such a reliable source. It has to be another important step in the right direction.

Trevor Butterworth writes: “David Tuller may not get a Pulitzer Prize for investigating PACE trial on a blog; but his service to—and we do not exaggerate—millions of sufferers around the world make it hard for us to think of another work of journalism so deserving of commendation.” Patients – including those who produced the initial critiques which first attracted Tuller to the issue – will heartily agree with that analysis, likewise with Butterworth’s acknowledgement of the important contribution of Julie Rehmeyer in drawing attention to the flaws of the trial. Let us hope their work pays off very soon and the study is deservedly retracted. Lead PACE investigator Peter White still has his finger in the dam but sweat is breaking out on his forehead. He must be wondering how much longer he can hold back the torrent of truth. Continue reading “Make Sure We Speak”