#pwME #MyalgicEncephalomyelitis Great article. In supporting #MEICC, we must show it is superior to the CCC at identifying patients for research cohorts. More essential reading from longtime patient/advocate Colleen Steckel.
Canadian Consensus Criteria (ME/CFS-CCC)
open.substack.com/pub/colleens...
#pwME #MyalgicEncephalomyelitis #MyalgicE #MEICC
Latest Substack: excellent listing of M.E. research studies that use the ME-ICC (International Consensus Criteria for M.E.).
Organized by date and topic of (neurology, cardiovascular, immune. etc.).
ME-ICC Research
open.substack.com/pub/colleens...
ME International Consensus Criteria 2011 - how to diagnose ME
Q: How can #ME be diagnosed?
A: The ME International Consensus Criteria, see the #MEICC poster below for more details 👇
#MEAwarenessDay #MECFS #pwME #pwLC #SpeirGorm #SpéirGorm #MEAction #LongCovid #PEM #MEawareness
#pwME #MyalgicEncephalomyelitis Re-read this for excellent info on what #MyalgicE is and is not. The #MEICC and its Physicians' Primer were written by 26 M.E. experts from around the world. Other "definitions" have been written by bureaucratic committees w an agenda + limited info.
#meawarenessmonth
Heute wieder dazu verdammt, im Gefängnis Bett zu liegen. Verbrochen hab ich nichts. Bin nur krank geworden. Draussen tobt der Bär. Kinder lachen. Die Sonne scheint. Ich weine.
#myalgischeEnzephalomyelitis
#severeME #MEicc #MEcfs
Mehrere blumensträuße stehen auf einem Tisch, rechts davon wird durch eine regenbogenfolie am Fenster einen regenbogenfarbenes Muster an die Wand geworfen
Ein bisschen Sonne kitzelte heute mein Haupt. Fast war es zu hell aber ich wollte den Regenbogen sehen und er kam 🌈😍
Menschen mit #severeME wissen, was für besondere Momente das sind.
Kostbar. Kraftraubend. Zauberhaft.
#MEcfs
#MEicc
#MyalgischeEnzephalomyelitis
#bedridden
PEM is what is used in the CFS and ME/CFS criteria. Post-exertional neuroimmune exhaustion is the symptom described in the International Consensus Criteria #MEICC
PEM is not required for CFS.
PEM is seen in other conditions.
See here: open.substack.com/pub/colleens...
This underscores the importance of stratifying patients who are given the CFS or ME/CFS label. A diagnosis of #MyalgicEncephalomyelitis needs to recognize the enterovirus connection. The #MEICC is a useful tool to stratify patients.
drive.google.com/file/d/1OLvC...
Looks like they are still using 1994 Fukuda CFS criteria.
We need info to include the International Consensus Criteria. #MEICC
Here are the sources for that: drive.google.com/file/d/1OLvC...
If you are looking for #MyalgicEncephalomyelitis specific research, I track those in 2 lists. One for #MEICC studies and one for ME/CFS-CCC.
See here: open.substack.com/pub/colleens...
Very important to be prepared for funding disruptions. I don't object to researchers including more than one patient group but I really hope they stratify the patients so we know when results differ between #MyalgicEncephalomyelitis & #LongCovid
Best case scenario is researchers use the #MEICC...
Yay! Thank you! That is great to hear.
For those who aren't familiar, this has links to explain about the #MEICC.
drive.google.com/file/d/1OLvC...
#MyalgicEncephalomyelitis International Consensus Criteria
Good to hear. We have included some of your previous research in our research list for #MyalgicEncephalomyelitis using the Canadian Consensus Criteria for patient selection.
Would love to see you use the #MEICC in the future.
open.substack.com/pub/colleens...
I think it would help if more were educated using the #MEICC information. Post-exertional neuroimmune exhaustion is the description used for #MyalgicEncephalomyelitis.
See my article about that here: open.substack.com/pub/colleens...
New article
Updated ICC Table of Contents Master List now has more links to #MEICC info other languages.
Including an added section for Español links.
#MyalgicEncephalomyelitis
open.substack.com/pub/colleens...
Good to bring this to the attention of the #LongCovid community.
Many parallels to how ME has been buried.
Highly recommend a distinct criteria for those similar to ME/CFS.
ME is buried under the current vague ME/CFS criteria. Criteria for ME is #MEICC.
LC needs groups stratified.
Glad to see the team used the International Consensus Criteria #MEICC for patient selection.
For credibility small cohorts need best research criteria.
For those not familiar with this research criteria for #MyalgicEncephalomyelitis, see info at links listed here.
drive.google.com/file/d/1OLvC...
Glad to see the team used the International Consensus Criteria #MEICC for patient selection.
For those not familiar with this research criteria for #MyalgicEncephalomyelitis, see info at links listed here. drive.google.com/file/d/1OLvC...
www.ncbi.nlm.nih.gov/pmc/articles...
30 #MyalgicEncephalomyelitis patients selected using #MEICC
"After therapy, favorable effects were observed with a decrease in performance status score or index for restriction of activities... "
Repetitive transcranial magnetic stimulation (rTMS)
For those not familiar with the #MEICC - #MyalgicEncephalomyelitis International Consensus Criteria, see this Table of Contents list of links:
drive.google.com/file/d/1OLvC...
Good to see the #MEICC used for study. Using well selected study subjects for #MyalgicEncephalomyelitis research leads to more useful data.
