Nielk
Senior Member
- Messages
- 6,970
This is my draft of the letter I am planning on sending in.
I would like take this opportunity to speak to each and every panel member of the IoM study to define Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS).
I would like to start with the statement, which I have previously included in my comment about the panel selection, that I am against this study contracted by the HHS in order to re-define ME/cfs and I fully support the experts, who have collectively treated and/or researched hundreds of thousands of patients, in their consensus of adopting the Canadian Consensus Criteria(CCC) for diagnosis now.
In addition, I have taken a poll of patient’s opinions on the ME/cfs website asking them to vote for the statement that best represents their views. The following shows the results of 67 (anonymous) replies.
What is your position on the IoM contract?
I oppose the contract. I support the experts’ letter urging HHS to adopt the CCC now.
61 vote(s) 91.0%
I don't like the contract but, since it is forging ahead, I support it
4 vote(s) 6.0%
I support the contract and feel the IoM study is a good thing
0 vote(s) 0.0%
I am not sure how I feel
2 vote(s) 3.0%
The poll has been up for about a week and although it is a small percentage of the active membership on the site, it does give a sample picture of the views that many patients share.
You might think why is this information relevant to me? The study is proceeding as contracted by HHS and I have been chosen as a panel member to contribute to this study to the best of my abilities.
I would reply that this is currently true but to ignore a large patient population’s view, of whose life will be affected by this study, would be amiss of the serious task at hand.
I would like to stress that these patients are fighting for what should be rightfully theirs, as citizens of this country; ‘health and the pursuit of happiness’. You have been tasked with developing a definition for this disease whose outcome, when used by clinicians and researchers, will directly affect these democratic rights.
Why the resistance to this government sponsored IoM study and the push to adopt the CCC?
The US government’s Health and Human Services Department has not recognized this disease for what it actually is; a complex, multi-system, serious debilitating, organic disease with the mandatory symptoms of post exertional malaise (PEM) and neurological deficits. (CCC & ICC) In all their previous definitions, HHS has not made these symptoms mandatory for a diagnosis of the disease. This has resulted in a broad definition which may include patients with depression, post traumatic stress disease, idiopathic fatigue and just plain deconditioning. With HHS’ help, this disease has become ‘an umbrella catchall’ diagnosis for many vague diseases.
Along with this ‘vague’ definition, HHS/CDC has endorsed graded exercise therapy as a treatment for this disease. This promotion of exercise as a therapy has resulted in harm and direct aggravation in the severity of the disease to countless patients.
To date, PEM has been shown in 2 day exercise testing (CPET) studies. Yet, the CDC has refused to use this 2 day CPET testing in their current multi-center studies. This blatant omission by design is a real red flag of the intent of HHS with this disease. If HHS was truly cognizant and truthful in their desire to define the organic multi-system disease that is afflicting us, they would have insisted on including the two day exercise testing.
From my understanding, the CDC’s multi-site study will be shared by this IoM study to re-define the disease. This will not adequately cover the real disease. It might be an overview of the ‘umbrella catchall category’.
When being tasked to define a disease afflicting a group of patients, the result will all depend on who that group of patients are that are being looked at. Are you being tasked to define the broad umbrella cfs term or the tightly defined ME disease as defined by the CCC.
If it is the one defined by the CCC, than we already have that definition and this study is just a waste of a million dollars. If it is the vague government endorsed term, just think of the harm that this would bring on the patients who are suffering from the real severe disease of ME.
All of the above is the reason why there is such a great outcry from experts, advocates and patients. We do not feel that this IoM study is the right venue for this re-definition and the task that you are charged with as an ‘evidence based’ study of the broad term is directed for failure. Any definition that is not minimally as tight as the CCC will not be describing the real organic disease that we suffer from.
