Additionally, they need to study ME/CFS as a neuromuscular disorder. Their own Whistler (2005) excercise responsive genes study, the Dubbo Infection Outcomes genetic study (which Reeves signed), the work of Yves Jammes, and the work of Tiziana Pietrangelo all indicate a channelopathy and a neuromuscular disorder. Rich VanK says this seems to be secondary to a metabolic disturbance, and that etiology would be well worth looking at.
Is there a way to still be diplomatic about the PEM thing but be a little (or a lot) firmer about it?
The CDC already partners with CAA (for education initiatives, for example, and occasionally in studies). There is no need to ask them to do this.
Allied Disorders - good suggestion! is there a way to emphasize that these should not be lumped together as a common diagnosis, as is the fashion with some groups? It's subtlely implied with the mention of "differences," but subtlety may not be effective.
Perhaps it would be best not to focus on fatigue as a common factor. Fatigue is rarely a unifying factor in disease--an inordinate focus on fatigue has contributed to the mess we find ourselves in today, and the fatigue of ME/CFS is unlike the fatigue of MS (which is unrelated to activity).
However, MS is still a helpful condition to study as an allied disorder. Myasthenia Gravis would be an excellent condition to add; there are some similarities--acetylcholine abnormalities of different etiologies, and muscles get weaker with use. In fact some of the mechanical diagnostic assessments for MG muscle strength might be useful in ME/CFS.
Also, let's please not say "mysterious." It would be more accurate to say "under-investigated." Or just leave that word out, either way. Or say they are "complex." But I don't like using a word that impatient people could (inaccurately) infer that the disorders have little basis in biology.
Toolkit - great suggestion, very needed! please include the stipulation that the physicians consulted should come from a perspective that considers CFS a biomedical disease distinguished by PEM and cognitive difficulties (per Jason) and low NK cell function and unusually strong and lengthy oxidative stress (the best-replicated findings).
Communication - needed and a good point, but it's probably necessary to point out that CDC needs to engage in bi-directional communication, a dialog, with CDC learning, if we can find a gracious way to say that. A CDC monolog to patients (which is what we would expect if no changes occur) is not going to help.
Financial accountability - great points, but I'm pretty sure there are people not credited in your statement who have worked on this.
We request that you create a new strategic plan that accurately reflects the resources available to you and identify core reasons why the CFS program at the CDC is not afforded the resources usually available for disorders of its magnitude. Then lay out a plan designed to address those reasons and request the funding necessary to carry it out.
this part is great!
I take issue with the notion that CBT/GET are evidence-based (I'm sidestepping the "value of evidence-based approach" discussion--which is, itself, a really good point; I guess I'm addressing the etymological meaning of the words).
was there a reason you dropped the "no more psychogenic research" point? I figure you had a reason; perhaps you found it unnecessary? I'm not sure whether it's best to merely emphasize biomedical or to also make it clear that the "bad coping" studies with no controls (i.e. they are bad science) are offensive and considered defamatory and trust-destroying.
(That goes for the "sleep-state misperception" type editorial comments as well, which are considered snide, defamatory, and trust-destroying; a better trust-building conclusion in this example would have been that perhaps sleep dyspnea is a more significant problem than they had previously thought, and they might consider consulting a pulmonologist regarding treatment options, which are available.
Do you see, CDC, the difference between callousness and disrespect on the one hand, and caring and respect on the other? If you were the patient, which approach would you trust?)
Measuring physiological correlates of physical stressors is great! Thanks for bringing that up.
Also, as far as I can tell, they have only two "hard" scientists in the intramural program at CDC. Unger is, I think, a cell biologist (or was once), and Rajeevan is a geneticist. The others all seem to be behavioural psychiatrists or such. The behaviourists should all be transferred to other departments (
although I cannot, in good conscience, recommend that they work with any other patient group, unless they can show they are better scientists than that guy they already sent away, but I'm certain some kind of work can be found, and I would even endorse an educational program to equip behavioral psychiatrists for different fields, such as graphics design). Also the associations with Emory's psychiatry department and with the others of the (bio)psychosocial school, should be permanently revoked. The ME/CFS department, which is officially in the division of chronic Viral and Rickettsial diseases, needs some actual full-time virologists, retrovirologists, and other infectious disease specialists, along with neurologists, immunologists, rheumatologists, cardiologists, pulmonologists, endocrinologists, oncologists, and hematologists.