All this and toothache

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.

Results

Well, I knew it. I’d hoped that the lesions would be in the place and of the type consistent with something treatable, possibly with champagne, chocolate and lots of relaxation, but it was not to be. The lessions were diffuse rather than clearly defined (as in MS) and in the wrong place. Low down, parietal lobe if I recall. The idea is to find out why. I could have another MRI with contrast (likely to make me feel ill for days, weeks or months) or a brain biopsy (idem ditto). The results would indicate if the inflammation is of the nerves or blood vessels. The treatments include steroids and chemo type drugs. Both have been tried by others with my illness and I don’t know one who found them helpful. They just felt more ill. This is where quality of life comes in.

If not treated, the trajectory is likely to be progressive worsening. If treated, I might have severe side effects from the drugs. Nothing can undo the damage let alone cure. I’ve chosen for quality of life. Mind you, it didn’t stop me from buying an anti-aging DVD.

The new cooker arrived but the gas had not been disconnected (we had no instructions that it should be), so we called an engineer, paid about £100, and he dealt with the gas and installed the new cooker left by the people who should have installed it. It worked while he was there but the grill went out twice while cooking turkey slices.

And if that wasn’t enough, the telephone line disconnected in the morning and was useless in the evening when ringing for a repair of the grill. I’ve had better days.

1st January 2013

It’s a new year but I have the same problems. Tooth was fine until I went out and the cold irritated a premolar. That’s a bad sigh. Pain persisted and didn’t like me biting on it. I’ve had it since before Christmas. Could be a fracture but also neuralgia due to grinding so it’s best to wait.

Some people, at least one of who does not have ME, is diverting attention away from the illness with request to sign petition for another condition and there is also a campaign to have Sir Wessely’s knighthood removed. It’s appalling. We might not agree about what ME is and how it should be treated but to my knowledge, he has done nothing illegal and has not blackmailed any editor to publish his articles. The problem is that editors won’t publish any articles on ME or the biomedical aspects of CFS in the BMJ and Lancet, so if anyone is to blame for the dominance of the psychobabble, its the editors. But group think prevails and all it will do is indicate to others that some ‘patients’ are prejudiced and intolerant. As I have noted so often, how can doctors differentiate between the sensible patients and the intolerant ones? Unless groups distance themselves from the prejudiced, they will do nothing but harm people like myself. We all get a bad name. And to think that some die of this disease.

Suzy C (not a patient) with her campaign re DSM-5 (which does not include either ME or CFS) is linked to Angela Kennedy, one of my tormentors who has done nothing but discredit me and other decent scientists using ridiculous arguments. But she has not threatened us so the CPS can’t take her to court. Suzy is one of those who wants to help but is obsessed with things that, shall we say, are low priority. If people have energy and want to help, there’s a lot to do which are more important. Like look at the finances of the BMJ and Lancet to see if there’s an explanation for their fondness for all things psychological when it comes to ME. You know what they say? If there’s something odd going on, follow the money.