By David Tuller, DrPH
On Monday afternoon, I had an e-mail exchange with Christine Hill, a spokeswoman for the Hennepin Healthcare in Minnesota. Thane Fredrickson, an ME/CFS patient, is currently under threat of involuntary psychiatric commitment. Because of patient privacy concerns, it was clear the medical center would not be able to provide any specific information. But reporters are still obliged to ask questions even when the answer will inevitably be “no comment.” Receiving such an inquiry also alerts an institution, in this case Hennepin Healthcare, that an issue is of public concern and that its actions are being observed.
Thane has lawyers working on his behalf and, as I understand it, is still awaiting a hearing on his case.
The e-mail exchange with the medical center is below.
Dear Ms Hill–
I am a public health academic and investigative reporter at UC Berkeley’s Center for Global Public Health, part of the School of Public Health. I frequently cover issues related to the illness ME/CFS.
Thane Fredrickson admitted himself for nutritional reasons last week and now faces possible involuntary psychiatric confinement. Does the medical center have a comment about this situation and why it has decided to pursue this strategy in Mr Fredrickson’s case?
I have already addressed his case in this post on Virology Blog, a widely read site hosted by Professor Vincent Raacaniello, a microbiologist at Columbia University. (I have cc’d Professor Racaniello here.) It is ironic that the medical center is seeking to pursue this strategy even as The New York Times magazine has published an in-depth look at the biomedical aspects of ME/CFS.
Thank you in advance for your attention to this inquiry.
David Tuller, DrPH
Senior Fellow in Public Health and Literature
Center for Global Public Health
School of Public Health
University of California, Berkeley
Mr. Tuller – because patients have the right to privacy, we would not be able to answer any specific questions about a patient’s medical care without his/her consent.
Hennepin Healthcare | Media Relations
19 responses to “My Exchange with Minnesota Medical Center Holding ME/CFS Patient”
Thanks David. I think that everyone should investigate the need for a power of attorney. Additionally, some might wish to pursue a Special Needs Trust for an adult with a disabling condition. As far as I know, these are available in the US. My information comes from an attorney in Oregon. As far as I know, this trust would need to be enacted by a parent, before that parent’s child reaches 65 years of age. The advantages relate to taxation and medical benefits in the US. One can simply put a small amount of money in such a trust to get it started. Depending on the situation, the accounting and tax filing for such a trust would be minimal.
Ask Thane to waive his privacy rights. I think he can do that – or assign someone else to be informed, the same way I can let my spouse or kids be informed.
This is ridiculous.
Good on you David. I hope Thane gets out of the harmful ( due to being unecessary ) psychiatric treatment and gets the help for his physical problem finally
The guy admitted himself voluntarily for nutritional reasons and now they want to commit him for supposed psych issues?? Utterly shameful. Thank you for raising this with the medical centre. As you say, now they know it’s on the public radar.
I hope they get sued.
The world is watching.
No ME patient should be imprisoned by psychiatry, whether that’s behind psychiatric institution walls or behind metaphorical doors that lock them out of any physical healthcare leaving only psychological or psychiatric treatments on offer. Paul Garner indicated in his recent BMJ blog -https://blogs.bmj.com/bmj/2021/01/25/paul-garner-on-his-recovery-from-long-covid/ – that sufferers need to take heed of how people who have recovered have managed to achieve that, (although it appears that he initially heeded the advice of ME patients who kindly told him what not to do so that may have aided his recovery).
Many patients who have unexplained illness may recover in time and some will no doubt achieve recovery regardless of what advice they follow. But some won’t, and it is those that need to be listened to because they are the sickest and their prognosis is likely to be very poor. It’s convenient for doctors to blame failure to recover on their patient’s lack of compliance/motivation and on their aberrant thinking patterns. It demonstrates an astonishing level of arrogance and lack of humility and empathy within the medical profession and shows just how autocratic medicine has become. In the ‘PCPCS’ – a primary care service in London for patients with medically unexplained symptoms (MUS) – see Goodelf’s blog -https://opposingmega.wordpress.com/2020/08/19/so-what-if-23-get-worse-2/ – 23% of MUS patients got worse on a measure of physical functioning with the psychological treatment they received but the UK medical profession doesn’t appear to be the slightest bit bothered.
I’d suggest that the label of ME/CFS is given out far too readily by UK doctors at least – well that’s my experience, my ‘feeling’ – and therefore includes many patients with misdiagnosed illnesses and some who will recover in time from post-viral fatigue, perhaps at a slower pace than most patients do. Some may well be deconditioned or depressed/low in mood. (This is why we need a tighter definition for ME.) But a proportion, akin to that 23% for MUS, will have a debilitating condition from which they can’t recover and that worsens with neglect/psychological treatment and exercise therapy – true ‘ME’, if you like. That may turn out to be the case for long-covid too. Paul Garner wrote that for him a purely biomedical approach felt wrong, but will he listen to patients who say that for them the psychological/exercise therapies approach ‘felt wrong’, didn’t work, harmed them? Or does he think that his feelings count more because he is an eminent doctor? It sounds to me like he has convinced himself of what the ‘truth’ is, based on his own feelings of his own illness course, and is in danger of turning his back on a significant proportion who are declining with the currently prescribed one-size-fits-all approach. Will he now join his medical mates and ignore the 23% that get worse, even if they are fellow doctors?
What has this to do with Thane Fredrickson? Everything. Ignore the 23% and this is where global medicine ends up – blaming the patient, blaming the patient’s mind and locking people up and out of the physical care and biomedical research that they so desperately need.
This is where the fake diagnosis ‘ME/CFS’ is particularly unhelpful. CFS is medically unexplained by definition, generally considered an example of MUS, while ME is a well-explained enteroviral disease.
Paul Garner’s recent hit job published in BMJ gives moral support to official actions like sectioning Mr Fredrickson. One wonders who bought him, and how much he cost. Welcome to the New Dark Ages, where the scientific method has been replaced by the cash-and-favors method.
The only way to stop widespread abuse of ME patients is in the courts. The UK allows private prosecutions and in the US the class action mechanism has been very useful. Even the formerly all-powerful tobacco industry has been brought to heel.
In the US there is an additional tool that could be brought to bear against the US government known as Section 504 of the Rehabilitation Act:
“No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency…”
This law is successfully used by parents to force local and state governments to provide adequate programming for special needs kids. The Americans With Disabilities Act works well against private organizations but Congress exempted the government from the ADA. They forgot to do that in the Rehabilitation Act. It is past time to see if it can be successfully used against NIH and CDC.
Jimells said – “One wonders who bought him, and how much he cost.”
I suspect we all have an idea of who might have been involved and I’d take a stab at the method – the oh-so-British suggestion of going down the pub for a chummy drink sometime. So patients are sold down the river for the paltry sum of a promised pint of ale?
The right to privacy, especially when the patient wants this to be publicized and has taken steps to that regard, is not a shield to justify denying the right to liberty. This is the hospital using the patient’s “right to privacy” as a cover for themselves, for a decision they made in violation of medical consent. Absolutely disgustingly immoral behavior.
@ Guido den Broeder: I believe your definition of ME vs CFS is not universal, and possibly outdated? To my understanding, in today’s biomedical research, ME/CFS are usually used synonimously or as an aggregated term. Even if the term CFS may have been psychologised at some time, it is by today’s biomedical researchers assumed to probably be the same biomedical illness. For example, the Canadian Consensus Criteria for ME/CFS that are widely used in current biomedical research in Europe require the same criteria for both ME and CFS, and they are largely similar to the International Consensus Criteria for ME. That means that according to up-do-date research definitions, the term CFS would more specifically refer to a fatigue syndrome with PEM etc., whereas also other forms of unspecified chronic fatigue exists. (In my personal experience, chronic fatigue that not fully confirms to Canadian or ICC criteria may however sometimes go on to deteriorate into the full form of the disease.) From what I see, CFS vs ME is sometimes informally used to denote a difference in severity of the illness, with CFS or ME/CFS more frequently used with moderate cases, while severe cases almost always identify as ME.
Therefore I would not agree with your statement that CFS is a medically unexplained disease by definition – although this maybe older understanding of CFS would still persist in certain medical or research circles, it certainly und fortunately does not among the biomedical ME/CFS research community.
Also I do not agree with your statement that ME is medically explained while CFS is not. Enterovirus infection is one of the established initial triggers for the disease, but many other known initial triggers for ME exist, and the actual biomedical disease mechanism is still unknown and currently being researched. From what I see it is for now being assumed by biomedical researchers to probably be the same one for ME and CFS. Also it is widely acknowledged by biomedical researchers (see for example Dr. Prustys presentation from Sep 2020) that due to its multisystemic nature ME/CFS is a complex disease with the same cardinal symptom of PEM, but wherein subgroups of patients exist. What’s a bit confusing about the term ME/CFS is also that the name seems to require brain inflammation (encephalomyelitis), but it’s important to understand that the term ME/CFS is like a naming convention that has kind of developed historically and is now being continued to use because it is so well established as a name for the disease, but the presence of brain inflammation is actually not required as a diagnostic criterion. Sending you my best wishes for your health! J
Psychiatry is THEE abuse industry.
Is there a reputable fundraising effort for Mr Fredrickson’s legal costs? It is time to give the psychobabblers a legal thrashing, and I would like to help. A large number of small donations would help show that patients will not longer tolerate being treated as punching bags, and we will fight back, one way or another.
p.s. I don’t do Facebook.
There’s a GoFundMe page on Twitter under the name Thane Black, with updates on his current situation.
Dear unknown J.
There is no naming convention resulting in ME/CFS. It’s just Davis and friends who believe that this is a thing, and Davis is not an expert.
The name ME is accurate for ME patients because yes, we have cns inflammation, easily confirmed by e.g. SPECT or PET. The enterovirus is in the blood and the spinal fluid, and still found in the tissue later on. Until 1954 the disease was named superior polio after the location of the inflammation.
There is no CNS inflammation in CFS, just like there is no fatigue in ME. Vastly different concepts, conflating them is done for dubious commercial and political profit.
There is another side to this problem though:
I went through a similar dilemma: agreed to go for ‘observation’ to a psyche unit *because I was too ill to look after myself and there are NO inpatient diagnostic beds in the NHS, EXCEPT for the ones in the metal health divisions. There is no ‘pathway’ from an observation bed in mental health, to a comparable bed in physical health, so the only way a physically suffering, but not clearly about to die, person can get to safety in the NHS, is to get committed to a mental health unit.
Unfortunately, while this solves the immediate problem of guarding against being found frozen to death–or similar– in one’s own home, it actually compounds the problem of trying to get the physical health side of the NHS to take any interest in helping you. Once your notes have been ‘branded’ with any of the modern euphemisms for ‘hypochondriac’, you are effectively barred from moving up the diagnostic ladder.
Until there are proper Diagnostic Hospitals and a Diagnostic Service, people with invisible but disabling illnesses can only get a bed in a psych unit: mental torture, though it, undoubtedly, is. I had to suffer 3 1/2 years of it.
For me the issue is that the patient needs to be able to access the care they need immediately. If a doctor framiliar with the patient’s medical history gets access to current hospital records (via patient written consent) then that doctor can can offer and informed opinion. But the hosptial may hesitate if they fear that the patient would die if they left the hosptial. In other words, some patients are just too sick to discharge. If only this man could be transfered to a clinic that specializes in his condition all bases could be covered. Also, side note, the hosptial has information that we don’t have access to, so this could be much much more complicated than any of us realize.
Hi David. Would it be possible for Thane to give his permission for the hospital to speak with you regarding his case?
Dear Guido, I thank you for your reply. Just for the record, I’d like to stand by the content of my previous comment. Of course I am not denying that you have inflammation as have many other ME patients do, but from what I’ve read not all have this. Just pls consider that if inflammation were a mandatory diagnosis at this stage, where ongoing research by scientists around the world points to many other possible aspects being involved in ME/CFS disease mechanism, it would be quite a bad for those ME/CFS patients who cannot show brain inflammation but are still very ill. Best wishes!