hi all - not sure if this is the right place to post this - Administrators, feel free to move it if not. My reaction a few hours after the meeting, after passing out for some time, was the following. Not sure what it is or where it should go - never done anything like this before -
But here's some of my reaction - what's yours?
Witch-hunt mentality OR Heroes?
When I was resting after the CFSAC meeting, a thought popped out of the rather empty fog that was my brain. The thought that there was a theme running through a lot of the testimony over the 2 days, not just from patients, but from doctors such as Lucinda Bateman and Dr Friedman. The theme of the witch hunt mentality.
Then, as I started typing this up, I realized that, maybe, the title should really be heroes. That I should focus on the positive, the amazing people in this field, rather than on the negative, the entrenched bureaucrats, administrators and care providers, and society in general who want to keep the status quo and who will attack, demean, harm and dismiss anyone who is perceived to threaten it.
Dr Bateman said that she runs a small business as a private practitioner as noone will hire her because of her association with ME/CFS. Her business runs in the red and she cant afford to pay for medical insurance for her staff. She keeps things afloat by working for pharmaceutical companies, I think it was nights and weekends, to pay some of the bills. She herself just got turned down by Blue Cross for medical insurance.
Dr Friedman is a professor at a medical college. Because hes been on the CFSAC and testified before them, in addition to doing care provider training sessions outside of his university, his employer has sent him a letter, stating that activities like these are outside of his job description and he will be punished, terminated, for doing them. A colleague has already been fired for similar activity.
Then there were the patients, care givers and family who made it to the meeting to share their stories.
Mike Desin, whose photo of himself, a 6 3 man in his prime at a skeletal 102 pounds, left to die bythe medical profession, spoke almost as loudly as his words.
LauralBs eloquent video showing her lying on the sofa, too fatigued to speak beyond a whisper, using the voice of her sister- in-law to describe her zest for life.
And the testimonies of medical ignorance and unprofessionalism, almost to a criminal degree, by the CDC, ER rooms, care providers, universities, and insurance companies.
Nightmares were all too familiar with. But all the horrors seemed almost balanced, or at least tipped towards hope by the participation of even more heroes, known names like Annette Whittemore, Dr. Peterson, Dr Bell, Dr. Klimas.... And names I had never heard before. Harnoop Singh, a medical student pleading for training. Wanda Jones getting the meeting webcast and helping the committee navigate government.
Throughout the two days of the meeting and in the final recommendations a clear consistent rational message was stated over and over again:
Centers of Excellence
new CDC leadership
using the Canadian or Fukuda 2003 definition instead of one that includes people with depression and is contrary to all the current research
research into the cause of ME/CFS and the various modalities currently showing some success in symptom treatment
diagnosis and treatment for patients
training for care providers,
medical curricula and board exams that include ME/CFS,
protection of the blood supply
and of course money
Im too tired to write more. There were many other amazing participants, from the public, from the medical community, on the committee and from other government agencies.
To all those heroes whose names I missed, I salute and thank you.
To all the Mcarthys, the Salem witch hunters, the inquisitors and the ignorant, I hope you never experience being on the other side of the hunt.
Personally, the heroes won out for me over these two days. I have hope that proper diagnosis & treatment for us, that education for care-providers, and that money for research will be here in the not too distant future.
And the witch hunt will end. The heroes will take the day. We will be healthy again.
But here's some of my reaction - what's yours?
Witch-hunt mentality OR Heroes?
When I was resting after the CFSAC meeting, a thought popped out of the rather empty fog that was my brain. The thought that there was a theme running through a lot of the testimony over the 2 days, not just from patients, but from doctors such as Lucinda Bateman and Dr Friedman. The theme of the witch hunt mentality.
Then, as I started typing this up, I realized that, maybe, the title should really be heroes. That I should focus on the positive, the amazing people in this field, rather than on the negative, the entrenched bureaucrats, administrators and care providers, and society in general who want to keep the status quo and who will attack, demean, harm and dismiss anyone who is perceived to threaten it.
Dr Bateman said that she runs a small business as a private practitioner as noone will hire her because of her association with ME/CFS. Her business runs in the red and she cant afford to pay for medical insurance for her staff. She keeps things afloat by working for pharmaceutical companies, I think it was nights and weekends, to pay some of the bills. She herself just got turned down by Blue Cross for medical insurance.
Dr Friedman is a professor at a medical college. Because hes been on the CFSAC and testified before them, in addition to doing care provider training sessions outside of his university, his employer has sent him a letter, stating that activities like these are outside of his job description and he will be punished, terminated, for doing them. A colleague has already been fired for similar activity.
Then there were the patients, care givers and family who made it to the meeting to share their stories.
Mike Desin, whose photo of himself, a 6 3 man in his prime at a skeletal 102 pounds, left to die bythe medical profession, spoke almost as loudly as his words.
LauralBs eloquent video showing her lying on the sofa, too fatigued to speak beyond a whisper, using the voice of her sister- in-law to describe her zest for life.
And the testimonies of medical ignorance and unprofessionalism, almost to a criminal degree, by the CDC, ER rooms, care providers, universities, and insurance companies.
Nightmares were all too familiar with. But all the horrors seemed almost balanced, or at least tipped towards hope by the participation of even more heroes, known names like Annette Whittemore, Dr. Peterson, Dr Bell, Dr. Klimas.... And names I had never heard before. Harnoop Singh, a medical student pleading for training. Wanda Jones getting the meeting webcast and helping the committee navigate government.
Throughout the two days of the meeting and in the final recommendations a clear consistent rational message was stated over and over again:
Centers of Excellence
new CDC leadership
using the Canadian or Fukuda 2003 definition instead of one that includes people with depression and is contrary to all the current research
research into the cause of ME/CFS and the various modalities currently showing some success in symptom treatment
diagnosis and treatment for patients
training for care providers,
medical curricula and board exams that include ME/CFS,
protection of the blood supply
and of course money
Im too tired to write more. There were many other amazing participants, from the public, from the medical community, on the committee and from other government agencies.
To all those heroes whose names I missed, I salute and thank you.
To all the Mcarthys, the Salem witch hunters, the inquisitors and the ignorant, I hope you never experience being on the other side of the hunt.
Personally, the heroes won out for me over these two days. I have hope that proper diagnosis & treatment for us, that education for care-providers, and that money for research will be here in the not too distant future.
And the witch hunt will end. The heroes will take the day. We will be healthy again.
