A Chronic Fatigue Syndrome / M.E. interview
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How did all start?
Viarl? Illness, chills, Jan 2014. 2 others of family also ill, but recovered. Tom did not ever recover again
Do you already have a diagnosis? How long did it take you to get it?
Maybe 1 year, 20 MDs, Psych etc
For what medical specialties have you been treated? What has been the most useful specialty for your?
Endocrine Neurology Infectious disease Cardiology Genetics ME/CFS specialists, Montoya, Kogelnik
What has been the most useful thing for you so far?
Saline IV. No effective treatments. Clonezapam Mg Citrate
What have been your biggest difficulties?
Cannot move except fingers Bedridden Cannot open eyes or talk since 2016 Cannot tolerate any light or any sound Too many MDs incl in ER find no biomarkers, say have you seen psych. This is BS! Need to train all MDs about M.E. No effective diagnostics or treatments Hospitalized 95 days in 2017. Much too noisy for ME. Only tends to make worse. Horrible place for M.E.!
How has your social and family environment reacted? Have your social or family relationships changed?
Cannot interact significantly with anyone. Cannot talk or communicate except about 5 sounds. Yet he can still think, just neuroinflammation prevents communication
What things have you stopped doing?
Stopped Valcyte since crashed. Stopped some antibiotics and antivirals that did not seem to help. Stopped taking to hospitals, since only make worse. Stopped trusting doctor unless they are educated about ME.
What do you think about the future?
Need $200M/year NIH funding. Need 50 states, then CDC, to track ME since CDC does not track ME/CFS. Need billionaire Philanthropists to fund Ron Davis & other groups to find effective diagnostics and treatments for M.E..
So far, which years have been the best years in your life? What have you done during them?
None have been good for Tom since this started in 2014. Every year has been worse. 0.1% functional or worse now. Semicomatose, barely living
What would you like to do if you didn’t have your condition?
Tom would get back to his computer science classes at Stanford, do research, see friends, go biking, play games, be his humorous self.
If you had to describe your life in a sentence, what would it be?
Life is full of surprises and can change overnight, from near perfect, to daily hell. Enjoy every day as much as possible
Finally, what advice would you give to a person in a similar situation?
Learn about M.E. from support groups, and self direct your treatment, train your best MD, change MD if they do not believe in M.E. Seek funding for OMF.NGO, SolveCFS.orrg Seek advocacy via MEAction.net Watch Unrest, Forgotten Plague, Llewellyn Kings CFS Chronicles and if severe, watch Perversely Dark from Norway Drink plenty of fluids, get some Mg, and do not push yourself or you can dramatically ruin your health
