Some friends and colleagues have asked me whether my Faculty Lounge posts on ME/CFS have any relationship to law or legal education (most recent post is here). The questions were completely sincere, let me add, and raised in the most thoughtful and supportive way – so I have decided to answer them here.
It is estimated that ME/CFS afflicts somewhere between one and three million Americans. Accurate numbers are not possible – due to misdiagnoses and the stigma of reporting – but let’s take a conservative estimate of 1,500,000, or 0.5% of the population. Assuming that the incidence is evenly distributed – again, something that we cannot know – there would be somewhere around 70 or 80 American law professors with ME/CFS, as many as 6000 lawyers, and perhaps 700 current law students. Reduce my estimate by half, and that still comes to 40 law professors, 3000 lawyers, and 350 law students.
I am not the only law professor in the United States with ME/CFS, but I believe I am the only one who has gone public. I know there are other law professors, lawyers, and law students with the illness, because they have contacted me – always requesting anonymity for fear that they will be belittled, ridiculed, or stigmatized. The fear, alas, is well justified. I have personally experienced the skepticism and disbelief, which is why even I didn’t come out about ME/CFS for over seven years.
My professional status has insulated me from the legal difficulties associated with ME/CFS, but others – including lawyers and law students – have faced issues concerning disability eligibility, medical insurance coverage, and school and workplace accommodation, all of which become exponentially more troubling when their illness is mischaracterized as primarily psychiatric. Regrettably, these are issues that are barely addressed in law school. (Here is an article by a British undergraduate with ME/CFS, detailing the devastating impact it has had on her education, as well as her university’s complete unwillingness to accommodate her.)
Consequently, I have made a point of promoting understanding of ME/CFS within my own sphere of influence, which happens to be legal education. There are probably several students coping with ME/CFS at nearly every law school, but they will not risk identifying themselves. Their lives will be made much easier if ME/CFS gets more visibility – on this blog, and hopefully in other well-read law school venues.
(An additional connection: Dr. Ellen Clayton, who chaired the IOM committee that “redefined” ME/CFS, is on both the law and medical school faculties at Vanderbilt.)
There has recently been great progress in public understanding of ME/CFS, but things are not all better yet. Just last week, a newspaper reported that “Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively,” which is something I will address in my next post.
[UPDATE: My post about the current status of ME/CFS research is here; at the end of the post, you will find links to David Tuller's three important posts on the Virology Blog.]
I also suffer from chronic illness, previously diagnosed as fibromyalgia, an amorphous sibling of CFS, but in the last year it has become clear to me that my illness is caused by exposure to toxins produced by mold. It is not an allergy. Some call it toxic mold illness, some call it chronic inflammatory response syndrome. Most of the thousands who suffer from this illness were previously diagnosed with CFS or with fibromyalgia. i agree with Steve that there is a growing mass of people who have these chronic illnesses, and that there are many in legal education, teachers, staff and students, who are affected. We need to overcome the stigma and talk about it, for the sake of our collective health, and because people suffering from chronic illness need lawyers and academics as advocates.
Brava, Lisa!
http://www.foundation.org.uk/Events/AudioPdf.aspx?s=1200&f=20110504_Wessely.pdf
At 16 mins, speaking about the PACE trial, Simon Wessely says: "It was the "final, kind of, definitive trial… I'm not connected with this trial. I recruited some patients for it but I was not part of it… I wish I had been…because it's a genuinely beautiful trial. It's one of the most beautiful behavioural medicine trials that we've ever seen… So, it's a fantastic and beautiful trial… We've improved the physical health, the psychological health, functioning and so on of a large number of people… It's also incredibly safe despite some of the things that's been said about it… these are very, very, safe treatments."
As a practicing disability attorney who was diagnosed with CFS/ME, now also known as SEID, in the late 1980s, I have successfully represented hundreds of individuals with this illness. I have also sat on a number of CFS Boards including the CFIDS Association of America, the AACFS (now the IACFS), the NJCFSA and I was also a co-author on the first Physician Consensus Manual on CFS which was funded by the New Jersey Academy of Sciences, the New Jersey Department of Health & Human Services, and the University of Medicine and Dentistry of New Jersey. It has taken forever but NIH recently announced that ME/CFS will be moved from Women's Health (with paltry research funds available) to the National Institute for Neurological Diseases and Strokes with increased research funds promised. The government has moved at a snail's pace with respect to this illness but, thankfully, it is moving in a positive direction. Over the years I have learned for an individual suffering with these symptoms to have a fighting chance of success against the insurance industry and the government, they need to be treated by physicians who truly understand CFS/ME, believe in it, and are familiar with the diagnostic criteria, and recent scientific advances in testing for symptom validity. Well meaning physicians who take the "throw down your crutches and walk" approach do not understand the illness or the debilitating physical and psychological consequences to the patient of such suggestions. Fortunately today there are skilled, respected providers including physicians, researchers and others who can document many of the more challenging symptoms such as fatigue and brain fog. There are neuropsychologists who can test CFS/ME patients and document the specific cognitive dysfunction found in CFS patients including issues with speed of processing, multi-tasking and working memory. There are also specialists who conduct Cardiopulmonary exercise testing which is a two day brief exercise test that measures physical responses to nominal exercise efforts in a 2 day period and can be used to document PEM. And of course there are other CFS treating physicians, including Board certified infectious disease specialists, internists, neurologists and others who have dedicated their lives and research efforts to this illness. These cases can be won, but require understanding, education and careful case preparation. I was heartened by your post and agree that many professionals (I've represented hundreds including doctors, lawyers, judges, and captains of industry) are ashamed to publicly admit this illness because the misinformation out there creates a stigma.
The results of the PACE trial have been spun in both lay and professional media to vastly overstate the supposed efficacy of CBT and GET, and more recently, in Lancet Psychiatry, to obfuscate the follow-up data showing these therapies to be no more effective than the basic medical care received by the control arm of the trial.
This lack of objectivity in press coverage can be traced back, in many instances, to the work of the UK Science Media Centre, which has briefed journalists prior to each new paper with highly partisan "expert opinion" drawn exclusively from academic supporters of CBT and GET.
The absence of dissenting voices from these briefings skews subsequent coverage such that even PACE's null result has been reported as evidence of the long-term efficacy of CBT and GET.
http://www.meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.pdf