Good day everyone.
I have had ME for a long time and I am angry. I am sick to the back teeth of this entire subject. I really want to swear now (but I won't). This illness has cost me everything over the years. Not just my health, but also my partner, my house, my friends, my career, my pension, my dignity, the whole damn lot. Here is what I have to say about this.
Stop falling into the trap set by the psychiatrists and their media buddies. Arguing about PACE will cause nothing but damage and heartache. No matter how you argue they will just turn around and tell you that PACE is brilliant. There is nothing to be gained by telling them it's not brilliant. They are not interested.
NICE and the psychiatrists and the British media and the Science Media Center and most doctors and most politicians and most people in Britain think ME is a psychiatric biopsychosocial exercise fear cuckoo illness belief.
We are all psychodeniers. End of story.
The best way to refute PACE is to present evidence that ME is a bog standard physical illness, on a par with MS or RA or Crohn's or whatever.
There are many hundreds of published papers that provide evidence that ME is a complex and serious neuroimmune illness. A physical illness.
It is not ideal for patients to do this refuting. We are 'mentally ill' remember. Imagine how it looks to the media, doctors, politicians, the general public. A bunch of mental psychodeniers saying we are not mentally ill. It isn't a good look. It doesn't help that most of us are seriously disabled.
We need able bodied, non-mad, non-loopy people to be our advocates. Here is a great suggestion that I bet nobody has thought of before. The best people to present all those hundreds of biomedical research papers are doctors and scientists. You write the damn things so it is your job to make sure the right people read them. In this case, the media need to read them. It isn't my job to do this. I'm ill. I'm a patient. All those papers are not much use right now, because they are hidden away in journals.
What is so hard about that? Why can't 50 doctors and scientists present this research to the media? It doesn't have to be a criticism of PACE or psychiatry. It doesn't have to be a ten billion page document that takes 10 years to write. Just list about 200 papers and get 50 people to sign it. How hard can that be?
There are some esteemed doctors and scientists interested in this illness. I'll give you a clue.
Dr Ron Davis - Stanford - One of people who made the Human Genome Project happen. Runs one of the most advanced genetics labs in the world. His son happens to have ME.
Dr Ian Lipkin - Columbia - Runs one of the most advanced pathogen labs in the world. Eats Ebola for breakfast. Spent $200,000 of his own money on ME research. He's committed to the fight.
Dr Michael Houghton - Alberta - co-discoverer of Hepatitis C virus. Lasker Award winner. Working on ME biomarker.
Dr Mario Capecci - Utah - Lasker Award and Nobel Prize. Neurology and genetics. Say no more.
Dr James D Watson - Nobel Prize - He discovered DNA. Say no more.
Prof Warren Tate - Otago - Rutherford Medal. Alzheimers work. His daughter has ME by the way.
Dr Mark Davis - Stanford - Runs a world leading Immunology lab. Currently his biggest single workload happens to be ME.
Prof Emeritus Jonathon Edwards - UCL - RA/B Cells/Rituximab
Dr Shepherd - obviously
Need I go on? How f***ing hard can it be to do the following-
1) Knock up a thoughtful cover letter
2) List 200 decent research papers
3) Get 50 top people to sign it
4) Send it to anybody who will listen. British newspapers and the biased BBC would be a good start. Followed by NICE.
Don't waste too much time trying to dismantle PACE. Trying to take PACE apart has been tried repeatedly and failed repeatedly. Psychiatrists will just hide behind the 'science' and their media allies and make people with ME look stupid. It will be impossible to get 50 experts to agree on what to write anyway. They will never agree on just how to criticize PACE.
Some letters or statements from notable individuals that criticize PACE would be useful, but these should be in addition to the 200 research papers. Present the extensive biomedical evidence as it stands now and PACE will start to discredit itself and hopefully self destruct.
Even journalists who are as thick as pig shit will perhaps be slightly curious when they start getting letters signed by Nobel Laureates explaining that there have been hundreds of studies going back decades. I'll tell you a secret now. People like White, Simon Weasel, and Truudie won't be telling journalists like Hanlon about all those biomedical papers. They won't be telling the journalists about Nobel Laureates being involved in this. The time for gentle academic discussions with psychiatrists is long gone, if it even ever existed. Just ignore them. Have nothing to do with them. Just produce a heap a research evidence and give it to the people who need it, such as journalists.
So who is going to volunteer to do this? Anybody with the stature and credibility to organize this? It would be preferable if someone like a scientist or a doctor went around getting signatures I imagine. Not some mental scumbag off the street like me. I don't mind helping to the best of my ability, but I'm not a doctor or a scientist. But I'll tell you what. If no one else does this, I'm going to do it myself.
I'll just finish by saying that this isn't a dig against Dr Sheperd or Prof Edwards. The both of you do great work. This is most certainly a deliberate dig at the medical profession, the media and the politicians though. Failures, one and all.
Thanks, Green Monster.
PS Green Monster isn't my real name. Call me Fred if you like.