Editor’s note: This update is provided by Thane’s care team.
UPDATE: Friday, February 5 , 2021
Thane was released from the hospital today and is home!
UPDATE: Wednesday, February 3 , 2021
Thane’s lawyer shared with us that the evaluation went very well on Monday morning. Thane agreed to a “continuance for dismissal,” which means that he will be discharged on Friday, assuming all goes according to plan. The petition will be continued for 30 days, at which point the court will dismiss it entirely.
The next step will be ensuring that Thane gets the medical care he needs to address his weight loss. We are working to establish a new care team, including a local GP who trained under a ME/CFS clinician and a ME/CFS specialist.
Thane still has a tough couple of days ahead in the hospital, so please send lots of good juju his way. The hospital environment and the threat of civil commitment have placed immense stress on Thane. Through it all, he has shown tremendous grace and strength.
Thank you for the outpouring of support for Thane. Everyone’s efforts have helped to put Thane on a better path to healing.
UPDATE: Monday, February 1, 2021
After a long week, there has finally been some progress in Thane’s civil commitment case! There was not much new information to share until Friday, when the court eventually served Thane the papers concerning the commitment proceedings.
The commitment process involves a series of steps. Thane is currently on a district court hold while awaiting his civil commitment hearing. He was finally assigned a court-appointed lawyer who has extensive experience in this area of the law. He seems excellent and has made it clear that he is on Thane’s side. His team is working to educate him on ME/CFS and how being in a hospital setting is causing harm to Thane’s condition and placing him at greater risk.
Thane’s team has explained to his lawyer that ME/CFS patients often experience medical gaslighting and are diagnosed with a somatic disorder. Lacking a diagnostic test places patients like Thane in peril. Ask any ME/CFS patient, and they will tell you that they look somewhat “normal” on paper when it comes to basic testing. Doctors often conclude there is nothing wrong and default to a psychiatric diagnosis. This is wrong and has to stop.
People with ME/CFS need specialized testing to uncover energy metabolism problems, autonomic dysfunction, immune abnormalities, gut dysbiosis, and endocrine dysfunction that conspires to make patients very ill. Concluding that a severely-ill patient is a psych case without doing the specialized testing needed is negligent at best.
Experts on ME/CFS worldwide are lending their support and helping to advise on Thane’s case.
This coming week will be a big one for Thane – please hold him in your thoughts. The commitment process involves a preliminary hearing, which occurs on 2/1/2021, and the commitment hearing will take place on Thursday, 2/4/2021. Thane’s team has worked diligently to assemble the information needed to fight back.
It is important to remember that there is still a good chance that Thane will go home this week. The court could decide that he does not fit the requirement for commitment. Even if the court determines that Thane meets the criteria, he could still be sent home on a provisional discharge. He has the full weight of the ME/CFS community on his side, including clinicians, lawyers, medical advocates, friends, and supporters who have jumped in to raise the visibility of Thane’s case. We are hopeful that once the court has the correct medical information, it will side in Thane’s favor and send him home, where he can begin to heal from this traumatic situation.
The bigger picture
Thane’s case highlights the medical misinformation that still surrounds ME/CFS patients. It also exposes a paradox that severely ill patients face. The sicker a patient becomes, the less access to the medical care they receive. Very few specialists in the United States can treat patients with such a complex medical picture – traveling to see one would destroy a severely-ill patient, and very few GPs have the expertise to handle one. Thane’s case also exposes the intersection of very severe illness and civil commitment. Sadly, Thane is not alone in this fight.
We will fight together, in solidarity, to help ensure that severely-ill patients get the care they need and avoid civil commitment.
Thank you for your ongoing support of Thane. Together we will win this.
For more information on severe ME/CFS:
IOM/National Academy of Medicine Report – Guide for Clinicians (2015) This report is long, but there is a shorter clinician’s guide: https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf
For the full report:
Beyond Myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness https://www.nap.edu/read/19012/chapter/1#ix
Diagnosing and treating myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – US ME/CFS Clinician Coalition (2020)
A concise and current document that is easy to share:
Dialogues of a Neglected Illness (Dialogues for ME/CFS) film series on very severe ME/CFS, featuring Dr. Nigel Speight. Please scroll down to find the video listed under severe/very severe ME. These are exquisitely-done videos that give a voice to the unique needs of patients suffering from very severe ME. https://www.dialogues-mecfs.co.uk/films/severeme/
Whitney Dafoe’s moving letter in support of Holger Klintenberg. Holger is a person like Thane with very serve ME/CFS battling against involuntary commitment in Sweden. https://www.facebook.com/whitneydafoe/posts/232536848284015
The Puzzle Solver: A scientist’s desperate quest to save his son
This book is about Ron Davis, Ph.D., and Jane Dafoe, Ph.D., and their son Whitney Dafoe. It provides an excellent overview of the history of ME/CFS and captures the experience of people with a very severe form of this disease. https://www.amazon.com/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507
This beautiful documentary highlights the struggle people with severe ME/CFS patients face while seeking a diagnosis and treatment. https://www.unrest.film/