Tom Camenzind's Story. ME/CFS Alert Episode 93

[@Melbuser30]

Thank you to the Camenzinds for sharing Tom's heartbreaking story. I wish every ignorant medical professional advocating Graded Exercise or Cognitive Behavioural Therapy as a treatment for ME/CFS would watch this video to understand the reality of severe ME/CFS and how patients this sick couldn't even do these therapies. We need a cure for this dreadful illness and this will only come about through a massive increase in government funding for research, which currently is pitifully low. The NIH is failing the ME/CFS suffers of the country.

[@jessical1969]

Llewelyn ,thank you so much for investing your time and care into supporting and advicating for patients like Tonm and his family. You have done so much for all of us with me/cfs from the mildly (yet very life altering) to the horrific state of health poor Tom is in. Thank you Llewelyn for your kind words and compassion, for your unwavering dedication to awareness.

[@ginac7839]

My prayers are with you. My energy is spent trying to advocate for this awful disease.

[@slovokia]

The question is: when will medical schools start teaching doctors about this disease? One thing is certain - public health is too important to be left solely in the hands of the medical profession because they have almost completely failed people with CFS.

[@shelleyq]

The hoped-for plans for distributing Jen Brea's documentary, UNREST, include trying to sponsor screenings and opportunities for education within the medical community. Better education is definitely a pressing need!

[@margaretwhittaker2291]

God bless this young man and his loving family. I have this disease but with a great deal less disability and suffering. My heart goes out to you

[@tvok55]

Tom would make a great candidate for Ron Davis's " Severe Patient" study. If they could make it happen.

[@juliashar]

i had mono in college and got this. I also have dyspahgia and long term ME_ also had many years with chemical sensitivity and mold- such a long road and hard and i dont even know how i am here still. the person who helped me the most is an intuitive chiropractor who uses kinesiology in nyc - i got sick in 1991. thank you for sharing.

[@marjoriekuntz313]

I also never fully recovered after a month -long bout with mono. I was diagnosed with CEBV within a year of having mono. I now believe it is ME/CFS. I should be grateful that I still function, but have days of overwhelming fatigue and infections. Hoping for a cure...

[@marjoriekuntz313]

Praying for Tom and his family.

[@coachwithme]

Extremely powerful. Thanks to all who participated to make this video possible.

[@KidCity1985]

I'm so sorry. Thank you for sharing your story. 3 things that have helped me over the past 23 yrs are savella, low dose naloxone and icing my head.

[@agoogleuser6679]

Why doesn't anyone mention sleeping sickness when they show videos like this? Or Encephalitis lethargica? We have an incredible medical hubris that plants new trees and refuses to see the forest.

[@zeen.1315]

Eyi mama angisakhoni... Imali iyangala😭. ❤❤❤💯🔥🔥🔥

[@lorrainedettbarn9384]

We had the shivers and night sweats . 4 years ago we were exhausted couldn't stay awake now I sleep almost all day and night. If I walk I'm exhausted sweat pouring soaking wet. I've had this three times in my life. Gamma with lidocaine and magnesium got me out of bed and in a wheelchair almost 5years. I stayed well until my Daughter died the grief and pain. I suffer great inflammation hope this helps.

[@JudyNunya]

that exposure to a virus and feeling like you are better because you have a normal persons cold or flu, and seemingly dealing with that ok immune-wise only to go backwards into a chronic thing for who knows how long, is my story so far too. Very gradual and never quite returning to the state you had before the virus exposure and the chronic manifestation of that. I think it is the road to death and awareness of what is going on is not very nice. It only takes one viral exposure or fungus and that could be it (in a week).

[@douglaswinslowcooper6099]

Shocking. Perhaps auto-immune like multiple sclerosis? Triggered by infection.

[@KidCity1985]

How do I get on the registry?

[@dominic2446]

1:53 "took his jerries" what does it mean?

[@thearkedcrown]

GREs its a college enterace exam

[@thearkedcrown]

I think this presentation of cfs is quinism. I bet they gave him cipro or another quinolone antibiotic or he had taken a quinolone antimalarial at some point. It's ridiculous that they don't present more of the medical history of these people when they tell their story. I think there's always something more going on with these cases.

[@dw322]

💙💜

[@IntarwebUser]

Dunno why people complain about the name. Chronic fatigue syndrome is self-descriptive. "Huh. I am. Chronically. Fatigued. I'm not just lazy. Not wanting to do much isn't "just the way I am". Something's wrong with me." If all people talked about/all the books on the subject/etc. had instead used that stupid name M.E., which doesn't mean anything on its own, I might not have realized I had a medical problem. I don't look up the meaning of every strange medical term I come across, there's just too many of them. I would have passed by M.E. without a second thought, and still be trying to solve my problem with reading inspirational quotes.

[@HanstheTraffer]

Doctor A. Melvin Ramsay was consultant physician in Infectious Diseases at the Royal Free Hospital in London, United Kingdom, where an outbreak of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) occurred in 1955. He is considered the foremost expert on the outbreak and later examined similar outbreaks occurring in other cities and countries. In 1985, Dr. Ramsay published a case definition of the illness called the Ramsay definition.[1] Throughout his life, he was committed to public and professional education about the illness and to dispelling misconceptions that the illness was of psychological origin.