It's been a crazy summer.
Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.
Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.
One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.
Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.
The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.
Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)
Dutch doctors blunder by dismissing symptoms in XMRV positive ME patient as psychosomatic and fail to diagnose Metastatic Breast Cancer (July 4th)
Too soon to Translate? An editorial in Nature (July 7th)
RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)
EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)
Patients have been waiting for news. Any news. Our lives have been put on hold after the infamous Lombardi et al. paper.
Science actually placed an expression of concern on it- warning everybody in the science world that maybe this XMRV thing is not going to pan out since no one can find it and since Coffin said so. Dr Mikovits and her team are standing their grounds. It seems that the one that can make a difference is Ian Lipkin whose XMRV study results due by the end of the year can make or break XMRV in humans and MECFS patients. The opinions are so polarized, that apparently you are either a believer or a non-believer. Apparently, Dr Lipkin remains agnostic, which in my opinion is a good thing.
One of the big surprise of the summer has been the publication in the Journal of Internal Medicine of the new International Consensus Criteria. Co-authored by 26 experts around the world, this paper took the Canadian Consensus Criteria and gave it steroids. Refined, more precise, and easier to use. This published online on July 21st. This date is important because a few days later Simon Wesseley will start attracting the attention on him and other few who allegedly received death threats from ME/CFS patients.
Another paper of importance is Dr Jason's work, Small Wins Matter in Advocacy Movements: Giving Voice to Patients (Aug 20th) In the space of a few pages, Dr Jason discusses the history of our disease, the social construct, the prejudices, and almost in a whisper in patients' ears, tells us how to win the small battles in order to get our voice heard. In my opinion this paper deserves more attention and publicity. Dr Jason has been a strong advocate for all of us, I can't thank him enough for the work he has done.
The flavor of the summer, though, revolves around Simon Wessely who has reported death threats quite publicly, followed by scientist (who can't find XMRV) Myra McClure. You can see the links following which relates to CFS and what may have triggered Simon's behavior. Very interestingly, Simon "came out of the closet" exactly 48 hours after the new International ME Criteria Consensus came out. Coincidence? Not at all. The proof is in the pudding... Read the very last link. Simon is deep in conflicts of interest. He is at war, so to speak, with a group of disabled patients that have been left behind more than once, and for over 3 decades now.
Loss of capacity to recover from acidosis on repeat exercise in Chronic Fatigue Syndrome- A Case Study (June 30th)
Too soon to Translate? An editorial in Nature (July 7th)
RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again (July 9th)
EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients-A case control study (July 13th, BMC)
Murdoch and Vaccines: Exposure of Crimes Reveals a Much Larger Story (July 17th)
James Murdoch is still supported by GlaxoSmithKline (Age of Autism-July 18th)
His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)
Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th)
New ME International Consensus Criteria (July 20th, Journal of Internal Medicine)
Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011
Chronic fatigue syndrome: understanding a complex illness (4 authors) July 28th
His Work Has Gone Viral (Dr Coffin discusses XMRV- July 18th)
Dr Bieger announces he can find XMRV in the blood of patients with ME/CFS (July 18th)
New ME International Consensus Criteria (July 20th, Journal of Internal Medicine)
Science versus Psychiatry – again Malcolm Hooper and Margaret Williams 22nd July 2011
The real victims of ME are those with the disease (July 29th)
'Torrent of abuse' hindering ME research (July 29th)
BBC Radio 4 Today: 'Malicious' harassment of ME researchers (July 29th)
ME researchers 'receive death threats from sufferers' (The Telegraph July 29th)
The Economist: Head Case (July 30th)
Professor Hooper: Wessely’s Words Revisited (July 30th)
ME researchers 'receive death threats from sufferers' (The Telegraph July 29th)
The Economist: Head Case (July 30th)
Professor Hooper: Wessely’s Words Revisited (July 30th)
About "Shoot the Messenger and see it that will cure you" by Rod Liddle in The Sunday Times July 31st 2011
Hillary Johnson: Cry Me a River (Aug 3rd)
Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)
Guardian: CFS scientists face death threats from militants (Aug 21st)
Hillary Johnson: Animal Magnetism (Aug 21st)
Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)
Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)
Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)
Simon Wessly's piece in Spectator: Mind the Gap (August 27th)
Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)
The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)
Protesters have got it all wrong on ME (Aug 29th)
ME patients considered dangerous (Aug 29th)
Professor Simon Wessely's conflicts of interest
Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science? Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits, "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.
Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.
We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.
Hillary Johnson: Cry Me a River (Aug 3rd)
Interview with Simon Wessely (originally by Stephanie Marsh in the Times Aug 6th)
Guardian: CFS scientists face death threats from militants (Aug 21st)
Hillary Johnson: Animal Magnetism (Aug 21st)
Discover Magazine:Chronic Fatigue Syndrome: Death Threats for scientists? (Aug 21st)
Health Activists Launch Campaigns of Abuse Against Scientists with Whom they Disagree (Aug 22)
Times Higher Education: Scientists researching CFS-or ME - are being targeted by activists who are now as dangerous as animal rights extremists (Aug 24)
Simon Wessly's piece in Spectator: Mind the Gap (August 27th)
Dr Malcom Hooper's response about Simon Wessely's allegation of death threats (Aug 25th)
The big Issue: Extremism has no place in the quest to find a cure for ME (Aug 28th)
Protesters have got it all wrong on ME (Aug 29th)
ME patients considered dangerous (Aug 29th)
Professor Simon Wessely's conflicts of interest
Obviously Simon got the media on his side. They view him as a victim. And how dare we, patients reject his medicine and his science? Not only he doesn't want to admit being wrong, he continues to do damage to the most vulnerable in our community, cutting off sick benefits, "sectioning" patients (mandatory psychiatric hospitalization), causing suicides and yes, ruining people's lives.
Simon's reach is international- sadly. We will never know the depth of his impact with the insurance companies and government entities, policy making, etc. This BS has been going on for decades! It is unbelievable as a patient to be caught in this, to be sick and not being able to access competent, science based medicine.
We got rid of Reeves last year (or was it this year, I forgot!). Time for getting rid of Wessely.
Excellent post kati, couldnt agree more! Thanks for all the links xxx
ReplyDeleteThank you Vikki. Looking at the sequence of events, it becomes clear that Wessely reacted after the new Carruthers et al paper.
ReplyDeleteHe is using his bags of tricks to ensure we won't win. However, he's the one that will lose. him and his wife have got to go.
I hadn't connected the dots between the Concensus and the media campaign. Thanks for the links.
ReplyDeleteWild Rest
Here is a psychological term for Simon -Cognitive Dissonance. People double down on bad ideas again and again rather than be wrong, especially if they have made a mistake of consequence. It would be funny if the consequences weren't so destuctive. Once again, a psychiatrist has mastered a destructive element of human impulse, and projected it onto his victims.
ReplyDeleteMSD
Thank you Wild Rest- It's pretty unbelievable what is happening. It is sad to say that I hope that the view of chronic diseases change with the new diagnosis of Venus Williams. I would be pretty upset, in some ways, that the government starts paying attention because a celebrity got ill.
ReplyDeleteYes Wessely's death threat articles did appear right after the ME ICC was announced. Then let's use it. And stop arguing with Wessely. It is a huge waste of time. We write essays, rebuttals, cartoons.... May make us feel good, or vindicated, but solves nothing. He gives his viewpoint, we give ours. Round and round it goes.
ReplyDeleteIf we have ME then call and diagnose it as ME. Not CFS. Or the more nonsensical and confusing ME/CFS. Let's stop joining and supporting groups that go along with this and have some credible advocacy, not tethered to CFS.
Is Wessely still involved in sectioning? Or has he contented himself with pushing CBT and GET? He certainly didn't talk about having people involuntarily committed during this little PR campaign.
ReplyDeleteThere is a 13 year old currently sectioned in UK. Now he says that he has nothing to do with ME anymore- however his name has appeared apparently twice this year on ME papers.
ReplyDeleteI disagree with Jill, I believe it is essential to point out the fallacies and misinformation spread by Prof. Wessely as publicly as possible. As we hone our arguments, they gain more force.
ReplyDelete