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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Which classifications are you refering to Sing? The proposals for DSM-5 or the longstanding proposals for ICD-10-CM?
Suzy
I've just heard Mindy Kitei testify - damn, she was on fire! Fantastic testimony. Hope somebody puts that on YouTube!
This was discussed yesterday and the details escape me but the gist of it was CFSAC passed a resolution against putting ME/CFS under the "R" group, basically so it would not be lumped in along with "chronically complex somatic symptoms" disorders and pooh-poohed as a psychiatric/ psychological disorder.
Also, they talked a bit about how the US method of coding differs from the WHO and sometimes goes its own way in coding things so what happens on the international level doesn't impact the US in the same manner. [American exceptionalism if you will]
They also mentioned that the ICD-10 committee in the US was away at a big conference so their leader could not attend but that the US ICD-10 group holds 2 meetings a year and does invite public testimony, although CFSAC didn't have the exact dates of the meeting. I think Dr. Jones mentioned they would try to find out and post the dates later on. The erroneous date of 9/14 and 9/15 was brought up but later found to be wrong.
The main contact for ICD-10 is Donna Pickett [phonetic spelling here on my part] at the National Center for Health Statistics at the CDC. I have enough stuff to follow-up and haven't followed this issue but someone else who is more versed on these issues can do so.
Testimony by Lori Chapo-Kroger, RN
Dear Dr. Wanda Jones, Dr. Christopher Snell, Chair and CFS Advisory Committee:
My name is Lori Chapo-Kroger, the founder of CFS Solutions of West Michigan. I would like to share with you the story of three of my friends.
Molly was a registered nurse and worked for the Michigan Department of Health. Mollys husband awoke one morning and found her dead next to him in bed. She died unexpectedly from ME/CFS.
Evert was a social worker until he got sick with ME/CFS. He spent the last several years of his life bedbound before dying of complications from ME/CFS. He died 3 days before Thanksgiving.
Jill took her own life last July because she was in so much pain. Im not sure if she could no longer stand the pain caused by ME/CFS or if it was from the emotional pain of disbelief from her doctors, friends and family. Maybe it was a little of both.
Could their early deaths been avoided if they received proper medical care? Probably. Could their lives have been more bearable? Definitely! I was an ICU nurse and worked with the severely ill but nothing compares to the suffering and abuse ME/CFS patients endure.
We are the walking dead. Some of us are so close to death that its like lying in a grave that has already been dug, desperately holding onto one strand of grass. Each time a doctor says there is nothing they can do, a shovel full of dirt is thrown on us. Disbelief. Another shovel. Told to exercise. Another shovel. We are being buried alive!
When in a crisis, we are afraid to go to the emergency department and often dont go. ME/CFS is not listed in the Merck Manual used in the emergency room. If your illness or disease isnt in the THE book, then youre condition does not exist. If you mention ME/CFS or fibromyalgia, youre automatically looked upon as psychotic and a drug seeker. You are dismissed without treatment, just verbal and emotional abuse.
Getting medical help should not be the hard part!
Healthcare providers are at a lost because ME/CFS is not taught in medical schools or nursing schools. There is no toolkit or protocol for chronic fatigue syndrome. Sadly, the only source of knowledge is from the misinformation on the CDC website.
For 30 years, patients have been misunderstood, undertreated and left to care for themselves. Often its the patients who support and take care of each other; the sick taking care of the sick. There is something very wrong with that picture!
We need to change the lack of knowledge and the stigma around ME/CFS so I ask you to answer these 4 questions:
What can you do as the panel of advisors for ME/CFS to get information about this disease into the medical and nursing school curricula?
How can you get ME/CFS into the Merck Manual, THE emergency room book?
Can the Medscape CME online course mentioned on the IACFS website be updated and reactivated?
Can you put up a website with correct information or work with the CDC to ensure that their site is not filled with misinformation?
Please do whatever you can to make this happen. This wont take much money but can make a huge difference in patients lives today.
Thank you.
Lori Chapo-Kroger, RN
Can the Medscape CME online course mentioned on the IACFS website be updated and reactivated?
Thank you, Suzy. You are being very generous with your time and help here, and I am sure I am not the only one being helped.
I recognized that there were two different classifications under discussion, with somewhat different consequences. I liked what the committee is proposing to do, in terms of trying to get ME/CFS listed as a neurological condition in the ICD-10-CM categories of illnesses.
But what I feel is most important for those of us on the sidelines here is to be aimed at the place where we can make a contribution, and so I see it is only for the DSM-5. I should go back and find your information about this, as it doesn't stick in my mind, and compose a letter. The more we team up in this letter writing effort, giving each other ideas, maybe the better. Because it sounds as though we need as many commentators as possible on the proposed changes or we will stay in trouble.
Since the way medicine and medical insurance are conducted comes out of a "cookbook", a "rulebook", exactly what these categories and rules are for us will make all the difference between help and no help/harm.
So please, Everyone, let's crank out some letters as public commentators for the DSM-5.
I liked what the committee is proposing to do, in terms of trying to get ME/CFS listed as a neurological condition in the ICD-10-CM categories of illnesses.