Thread by @MyalgicE

The International Consensus Criteria for ME states: “Misperceptions have arisen because the name ‘CFS’ and its hybrids #MECFS, #CFSME and CFS/CF have been used for widely diverse conditions”. #pwME #MyalgicEncephalomyelitis

@EmergeAus “Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name.”

@EmergeAus “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

@EmergeAus “Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.” emerge.org.au/wp-content/upl…

@EmergeAus The International Consensus Criteria Primer on ME is clear on why ME doesn’t equate to CFS. The 2002 Australian Chronic Fatigue Syndrome Guidelines further show why CFS is unhelpful, incorrect and stigmatising. Here’s what it says:

@EmergeAus The 2002 Australian CFS guidelines say fatigue is tiredness not related to exertion.
The ICC says ME is ‘adverse responses to normal exertion’.

@EmergeAus @RACGP @theMJA The 2002 CFS guidelines say CFS is not a disease, just a pattern of symptoms.
The ICC says ME is a distinct disease. #pwME

@EmergeAus @RACGP @theMJA “Characteristically, there are no abnormal physical findings in people with CFS”.
ICC ME finds multiple abnormal responses to exertion, neurological abnormalities, immune impairments & energy production impairments. #pwME #PwME4ICC #MyalgicEncephalomyelitis

@EmergeAus @RACGP @theMJA The 2002 CFS guidelines “discourage excessive rest”.
ICC ME section on ‘Maximising Rest’:
“Listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient energy on demand makes it essential that low energy reserves are not depleted.”

@EmergeAus @RACGP @theMJA 2002 CFS guidelines: “maladaptive attitudes and behaviours may increase disability and retard recovery”
#patientblaming

@EmergeAus @RACGP @theMJA 2002 CFS guidelines encourages graded exercise, which the @MEAssociation found harmed 78% of respondents.
ICC recognises exercise can harm: “Both submaximal & self-paced physiological limited exercise can result in PENE.” #MyalgicEncephalomyelitis #pwME

@EmergeAus @RACGP @theMJA @MEAssociation “Most fatigue syndromes are of short duration and resolve spontaneously” says 2002 CFS guidelines.
A fatigue syndrome is not ME.
ICC ME Primer says “Restoration to full pre-morbid health and function is rare.”
#PwME4ICC #MyalgicEncephalomyelitis #MillionsMissing

@EmergeAus @RACGP @theMJA @MEAssociation Aust 2002 Guidelines say CFS is the same as ‘neurasthenia’, a psychiatric term: “weak nerves” in which the sufferer is “thought to be easily overwhelmed by the ordinary stresses of life, with resultant symptoms of somatization, anxiety & depression” (Mental Health Division @WHO)

@EmergeAus @RACGP @theMJA @MEAssociation @WHO The International Consensus Criteria Primer on ME 2012:
“These observed pathological changes are consistent with neurological disorders but not psychiatric conditions.”
ME is not a psychiatric condition.
#pwME #MyalgicEncephalomyelitis #MyalgicE

@EmergeAus @RACGP @theMJA @MEAssociation @WHO The Australian 2002
Chronic fatigue syndrome guidelines say there’s “diagnostic uncertainty between CFS and psychological illness in relation to somatoform disorders” (psychological distress manifesting as symptoms).

@EmergeAus @RACGP @theMJA @MEAssociation @WHO The CFS guidelines don’t trust patients to tell the truth.
Is this sexism where women can’t be believed?
“An independent, corroborating history should be sought from a spouse, partner or other family member”.

@EmergeAus @RACGP @theMJA @MEAssociation @WHO Aust CFS Guidelines encourage doctors to withhold information and not to tell people they have CFS.
It “might be prudent to refrain from making a definitive diagnosis” because it would hold them back from recovery.

@EmergeAus @RACGP @theMJA @MEAssociation @WHO The Australian CFS guidelines say “most people with CFS improve gradually and some eventually recover”.
ICC Primer on ME says
“Early intervention and appropriate treatment strategies may lessen severity of symptoms. Restoration to full pre-morbid health and function is rare.”

@EmergeAus @RACGP @theMJA @MEAssociation @WHO @threadreaderapp please unroll