1. Proper definition, name + code 4 #MyalgicEncephalomyetitis r vital 2 a million American men, women + children & 17 million people worldwide suffering from the disease.
2. @CDCgov have created faulty definitions+names 4 #ME & The National Center for Health Statistics (NCHS/division of CDC) tgether have kept tight control over definitions + codes.️
3. #ME experts defined (ICC) + named (#MyalgicEncephalomyelitis) the disease but @HHSGov & Gov's around the world refuse 2 use experts' def+name. Simularly, US + countries around the world use improper codes for the disease.️
4. Process 4 defining, naming + coding should b largely left 2 #ME experts+advocates+patients and should be transparent. But, once again, process 4 coding was conducted w/o transparency as evident by recent meeting of NCHS/CDC.️
5. For years, #CFSAC Members hv addressed code issues 4 #ME & requested Donna Pickett (NCHS/CDC) attend meeting + answer Committee q's - after pressure she finally attended in 2011. ️
6. Watch Donna Pickett (NCHS/CDC) answer my q @ #CFSAC about how much control+influence CDC has over #ME cfs coding process. Vid1m30s
7. Watch Dr. Leonard Jason q Ms. Pickett @ #CFSAC if NCHS understands case def controversy and diff btw cf+cfs. Vid3m
8. On September 12, 2018, Donna Pickett (NCHS/@CDCGov) held meeting 2 push 4ward Gov's proposal 4 new code 4 SEID and other alarming changes w little input or transparency from #MyalgicEncephalomyelitis community.⏰
9. Pls check out advocate Gabby Klein's blog site where u can find link 2 video + summary of NCHS/@CDCgov meeting of SEID coding proposal. https://relatingtome.net/nchs-cdc-proposal-for-icd-10-cm/
10. Improper def+name+codes lead 2 misdiagnosis, inappropriate+harmful treatments, denial of tests+insurance reimbursements+disability benefits, worsened health, convoluted research results, erronious medical education, false media reports & bias+stigma of #ME pts fr @HHSGov
11. Advocates r justifiably concerned @HHSGov + @CDCgov + @NIH + @NCHStats have progressively muddied the waters of unrelated diseases+conditions in effort 2 disappear the neuroimmune disease #MyalgicEncephalomyelitis. #Resist ️
(Edited a few times for layout)