Eileen Holderman’s latest Twitter storm 23 Sep 2018

[alisonorr]

https://twitter.com/i/web/status/1043945863222112257

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)

 

[taniaaust1]

thanks, from the last video which gets very interesting at 2:47 onwards she quotes

"We were made aware that there are conflicting and varying definitions out there but again definitions are not in the classification"

..........................


my comment - How on earth does one properly classify anything if there are all different definitions to it with some being entirely different representing different things?

Once again they are stalling like they have always done and they will keep ME buried by this if they keep doing this.

 

[Nielk]

Here is a link to information on this proposed change to US ICD-10-CM which has been approved by Dr. Lily Chu of the IACFS/ME org.

https://relatingtome.net/nchs-cdc-proposal-for-icd-10-cm/

 

[alisonorr]

Thanks, Nielk. It’s also linked in tweet no 9 above.

 

[Nielk]

Good question by advocate Eileen Holderman on twitter.

https://twitter.com/i/web/status/1047595220509122560

https://twitter.com/i/web/status/1047596693557075968

https://twitter.com/i/web/status/1047597857296068610

 

[alisonorr]

Good question by advocate Eileen Holderman on twitter.

I do hope they all answer!

 

[Research 1st]

thanks, from the last video which gets very interesting at 2:47 onwards she quotes

"We were made aware that there are conflicting and varying definitions out there but again definitions are not in the classification"

my comment -
Once again they are stalling like they have always done and they will keep ME buried by this if they keep doing this.

Hi. If neuronal inflammation in imaging studies is proven in wider studies in 'CFS' such as Nakatomi's (using better methods of detection hopefully) then if those with power and influence still insist on the name CFS instead of ME, those with CFS who have the microglial inflammation evidence, can't have CFS due to the diagnostic criteria that removes the presence of inflammation (encephalomyeltis/low-grade cyclical encephalitis found in small studies or arguably, ME patients).

So I'd not worry too much as once research homes in on the type of inflammation in the brain patients have, then no one can legitimately argue against it, and PWME (currently called CFS) will probably end up with an ME type diagnosis anyway!

 

[JES]

Any naming change might end up causing more confusion than clarity. The latest example of this confusion is a Twitter post by Michael Sharpe, where he states that CFS and ME should have been kept separate. I can already imagine the development that would follow should such a separation be made. Ultimately, very few people would end up being diagnosed as ME, and while those few lucky people would probably be relieved from having to deal with Sharpe's treatments, anyone under the term "CFS" would be a candidate for BPS treatments.

The second problem is with the term inflammation. Many doctors do not consider the type of inflammation seen in ME/CFS, depression or Alzheimer's as classic inflammation. There was a long discussion about this on another forum. Microglial activation would for sure be a better definition, but having that in the disease name would probably confuse people even more.