@medfeb , a bit of an alert (if I'm not mistaken):
I think I just found out something which is a clear loss regarding the CDC website. We (RME, the Swedish ME Association) have a fact sheet regarding impairment and prognosis, where we quote reports, articles and official sites like IOM/NAM, CDC, etc. Link to our fact sheet: http://www.rme.nu/fakta_referenser_prognos.pdf
We have quoted the (previous) CDC website saying:
“CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.” http://www.cdc.gov/cfs/symptoms/index.html
This sentence is now not to be found on the CDC site - or am I missing it?
This is a key sentence which we have used in communication with disability agencies, health care providers, decision makers, etc. It's a shame to see it gone (if I'm not mistaken) and it would be fantastic if they restored it (changing "CFS" to "ME/CFS").
@medfeb , both the sentence now excluded from the CDC site and the NIH sentence about pre-disease functioning are in the IOM report.
From the IOM/NAM report:
"Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (…) Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being houseor bedbound by their symptoms."
"Most patients never regain their premorbid level of health or functioning (...) The duration of ME/CFS and the potentially debilitating consequences of symptoms can be an enormous burden for patients, their caregivers, the health care system, and society."
I'm thinking all of the sentences above from the IOM report should be on the CDC site!
PS. I'm of course very happy about many of the changes to the CDC site - even though I focus here on what's missing, I don't mean to sound negative! Very happy about all the improvements and so incredibly grateful for all the hours, days, months, years of hard advocacy work that has brought this about!
Tagging @medfeb and @mango