A resource for clinicians and patients, U.S. ME/CFS Clinician Coalition. OMF.

Ben H

OMF Correspondent
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Hi guys,

For anyone that is interested, The U.S. ME/CFS Clinician Coalition, a group of U.S. ME/CFS experts, has authored a handout on the basics of diagnosis and management of ME/CFS.

"This handout is being made available on our website for the medical community to help them better understand how to recognize ME/CFS and how to appropriately care for patients. Patients may also find it useful to provide this handout to their own providers."


Please see below for the link:


https://www.omf.ngo/2019/09/01/new-guidelines-for-diagnosing-and-treating-me-cfs/


Thanks,

B
 

Archie

Senior Member
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Ben H , can you litle bit open the reasons why it seem like OMF fade out the known historical definition about how and why ME is/starts ?

I find OMF wiews as conflicting what comes to the knowledge i have about ME.

https://www.hfme.org

If i read the HFME site, and compare the wiews, knowledge it have about ME to OMF, i cant help that i feel something odd in OMF information, where is the story about enterovirus behind ME ?

I dont even see that ME is by definition same as CFS . Both do have same symptoms like fatigue, but in ME the etiology how it start dont sems as " unknown" as OMF seems to claim ?
 
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I find OMF wiews as conflicting what comes to the knowledge i have about ME.
I'm a bit unclear on your question...the document attached was not written by OMF, but was written by a group of clinicians. It does not include a history of ME..is that your concern?

I could understand not including a history narrative in this type of document...6 pages...hoping to strengthen diagnosis and treatment. We know doctors- often say they won't read any of that...so keeping it focused on the key pertinent issues seems helpful.
 

Wishful

Senior Member
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While there might be other aspects of ME that could have been included, I'm quite happy with the document. I wish I'd had that on hand at all my first meetings with doctors: "Here's your homework. Next appointment you can ask me appropriate questions."

where is the story about enterovirus behind ME ?
What story? No one knows for sure what role enteroviruses play in some cases of ME, so it shouldn't be included until something is actually known. No one knows how ME starts either. Immune system activation seems to be a common trigger, but it's not actually known whether it's the only trigger.

The list of comorbid conditions listed 'new allergies'. I developed my first type I allergy a couple of years before my ME first noticeably triggered. That makes me wonder if there are some stealthy changes caused by ME before it gets triggered into the full-blown version of ME.
 
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I could understand not including a history narrative
I could also see including the History of the History of ME...in this type of document would fuel more name calling...like we have to be really SAVVY...in putting out info...

I'm typically reluctant to send out anything which seems to ALWAYS include the psychsomatic narrative...its like it keeps REINFORCING the very narrative that needs to die.

Doctors could quickly get defensive, or recall things they were told during training and it can push buttons.

A single sentence: referring to the long and sordid history of outbreaks and disregard, could be included as a reference...or footnote!