It’s been a busy week. My new desktop failed with the monitor going off for no reason, not retaining settings, and not able to install my scanner drivers. The software expert is on holiday, the company that sold it has refused to help further and left me to Lenovo and ofcourse, they have no systemboard in stock to come and replace it under my ‘next day’ on- site warranty. It all got too much.
The phone still cuts off intermittently and BT can’t find the fault. This is the wrong time for constant problems with the line but all we’ve been offered is to try Virgin (cable, new holes in the wall and a new broadband provider as my current one uses BT lines).
People who promised to help place screw caps in the kitchen haven’t. I wanted to buy some Clearasil and they no longer make the product for sensitive skins. I bought a steam cleaner which is appalling, but thankfully, I got it from QVC so can send it back.
What really depressed me, however, was a letter cosigned by the Countess of Mar and my old consultant, Dr Weir, as well as the person who tried to get me struck off (for challenging him): Prof. Hooper. No one dares to speak out against him anymore, even though he is aggressive, insinuates, fabricates etc. He is not helping people with ME; he is making us look bad. In the letter, published in the Independent on Sunday, they argued against Prof. Wessely getting a prize for his research. OK, I don’t think he deserves any prizes for what I regard as poor quality studies etc and he has portrayed us in a highly negative way, but I can’t help feeling that the decision-makers were influenced, at least in part, by the years of aggro from Hooper, Stewart and co. I suspect this may also have played a role in getting his gong. Usually, one is awarded a lower honour before a knighthood, so his case was unusual.
Point is that many groups and patients are following Prof. Hooper like the pied piper of Hamelin. Not questioning. Lost. Walking away from the real problems and therefore not finding a solution. If it goes on, Wessely will add to his prizes. The real problem is that the editorial policies of the widely read UK journals keep doctors unaware of the evidence of pathology. Hooper is obsessed with the ‘Wessely School’ and has made Simon out to be someone he is not. Unless he IS going off to the editors of the BMJ and Lancet and holding a gun to their head, insisting they publish only psychological research and rejecting anything that challenges their concept of CFS. If there’s evidence of that, then I’m wrong. But there is no evidence of that. They certainly haven’t presented the courts with anything. It’s just accusations made online.
Something has influenced successive editors of these trusted journals to promote the fear-avoidance model and reject all studies of pathology. They don’t even get an independent commentary of studies like the PACE trial. The writers are invariably people who agree and promote the CBT model themselves. But you challenge Hooper at your peril. Patients who recall 2004 know that so stay quiet. And hence it might appear that all patients agree with him. The advantage of the letter is that in a court of law, Hooper can now be sued for defamation for if a physician and member of the House of Lords co-signs a letter, he can’t be regarded as insane. (Insane people can’t defame).
From the Indie on Sunday 13th Jan: http://www.independent.co.uk/voices/letters/ios-letters-emails–online-postings-13-january-2013-8449260.html
This was included in the original and added in the comments on the letters online. “Sir Professor Peter White, on behalf of himself and his 26 co-signatories, has apologized to the three of us following the publication of their letter on 2 December 2012. He made it clear that he did not intend to imply that we were harassing Professor (now Sir) Simon Wessely. We were not harassing him. None of us believes that harassment is a means of advancing scientific debate, and certainly not in promoting a greater understanding of the causes of ME/CFS.”
Perhaps it’s not harassing. Perhaps it’s cyberbullying or defamation. It certainly went way beyond evidence-based, valid critique in relation to me, Prof. Pinching and Dr Charles Shepherd. Attempting to get me struck off and inciting hatred was perhaps not harassment. And unless I have missed something, Peter White has not received a knighthood.
If they go on like this, Peter White will get a CBE next June. They just don’t get it and who suffers? The ordinary patients with ME. After all, how do doctors differentiate between the angry Hooper followers and the sensible, calm types like me?
Still have the toothache. If there’s one thing I must do is get it sorted. You can cope with a lot less trauma but it might require more visits to the endodontist and that’s hardly going to help me rest and relax.
A wobbly tulip from Amsterdam. 