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Dr Mark Guthridge
@Dr_M_Guthridge
, 8 tweets, 14 min read Read on Twitter
#MECFS citizen science: What are the answers to these 6 important questions on Myalgic Encephalomyelitis???

The insightful questions below come from this nice @diagnostic_mdpi review

#mdpidiagnostics #pwME #chronicillness #SickNotWeak #MyalgicE
mdpi.com/2075-4418/9/3/…
1. Is there a genetic susceptibility which leaves some individuals vulnerable to #MECFS after exposure to a virus, bacteria or toxic chemical?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #genetic
2. What is the key initial physiological trigger causing the dramatic downward spiral in health leading to #MECFS?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #immunity
3. Is the impairment of energy (ATP) producing pathways a consequence OR a cause of #MECFS?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #metabolism #mitochondria #medtwitter
4. Is there an unidentified ‘molecular factor’ in the #blood that can cause molecular changes in the cells of #pwME as implied from the effects of #MECFS serum on healthy cells?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi
5. Why does the ‘switch’ in response to an infection not return to normal in #pwME, as is the case for most viral illnesses?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #immunity #virus #medtwitter
6. Why do relapses frequently occur in the chronic stage of #MECFS, implying a hypersensitivity to even minor biological stressors?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter
Many #MECFS patients are highly scientifically literate and and have a deep understanding of their own disease

#pwME insights into the above 6 questions will almost certainly provide some answers to the puzzle

#chronicillness #MyalgicE
mdpi.com/2075-4418/9/3/…
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More from @Dr_M_Guthridge see all

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Dr Mark Guthridge
@Dr_M_Guthridge
Thread:

#MECFS patients face disbelief that they are sick

Many #MECFS patients are told that they are simply tired, stressed, anxious, depressed, lazy or malingering

How can #pwME respond to such disbelief and lack of understanding??????

See thread below:
2. Below are 7 evidence-based scientifically supported findings that you can use to inform those who dont understand that #MECFS is a multi-organ, systemic and severely debilitating illness

From a lovely review by @HarvardAskDrK in @JAMA_current
ja.ma/2xF3WNT
3. #pwME have deficiencies in 3 organs important for the body's hormonal balances called the hypothalamic-pituitary-adrenal axis

Importantly, the deficiencies observed in #MECFS patients are quite different to that seen in #depression
Read 10 tweets
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Dr Mark Guthridge
@Dr_M_Guthridge
1. thread.

Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#MedEd #MedTwitter #chronicillness #chronicpain #SickNotTired
frontiersin.org/article/10.338…
2. #MECFS is commonly misdiagnosed as a #somatic disorder

#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"

frontiersin.org/article/10.338…
3. #MECFS symptoms can be diverse, complex, fluctuate and overlap with many other conditions making the diagnosis difficult

This @FrontPediatrics paper lists 33 (!) co-morbidities commonly associated with #MECFS

#MedEd #MedTwitter #pwME #SickNotTired
frontiersin.org/article/10.338…
Read 8 tweets
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Dr Mark Guthridge
@Dr_M_Guthridge
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets

Related threads

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I Am SciComm
@iamscicomm
[Day3: Creating & Sustaining Spaces of Practice]
Q: Have you created or been part of initiatives for #Science #STEM #STEAM #SciComm practice? Are you considering creating one yourself?

Today we'll discuss "safe spaces to fail" and scaffolded experiences to build up your skills!
Why do I care?
As a former academic & now in my work to spread adaptable skills in #scicomm through #comedy, it strikes me how little prep we get to teach or give strategic talks as we make the shift from undergrad to grad levels

How many bad habits do we accumulate b/c of this?
What are some bad communication habits in #Science #STEM you've seen, experienced, or are still working to overcome?

Here's where I used to struggle:
- preparing talks the night before
- going over time
- imagining the audience wasn't even there
- bad PPTs
- STAGE FRIGHT
Read 17 tweets
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Dr. Wendy Bohon
@DrWendyRocks
Spending the morning at the National Press Club for the “Science During a Crisis” event. Interested to hear about the new report and the call to action. #science
Here the agenda
“Science has a key role to play in the immediate hours after a crisis.” - David Oxtoby
Read 20 tweets
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Jennifer Brea
@jenbrea
From the annals of things we used to know and completely forgot about. I just got tested for serum carnitine for the first time. I don’t know how this never happened before, but I was clearly deficient, am now taking levocarnitine and noticed immediate improvements.
Oh look, three studies from 1994-1995 on low serum carnitine in #mecfs: me-pedia.org/wiki/Carnitine Not enough science to start digging deeper and helping people feel better my ass @nihdirector.
Before we find “the biomarker” (how many diseases don’t have this and yet get on their merry way regardless) how about a consensus on what tests we should be running on everyone such that we can at least be symptomatically treating what is commonly and measurably wrong?
Read 5 tweets
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FaceTheCuban© SirLRO🎈{Interactive}
@FaceTheCuban
...#Positivity is in each & everyone of us. Let it flow more often, makes a better day. #SirLRO
...#Positivity ~none said it was easy, all you have to do is one step at a time. I know you can, keep going. #SirLRO
~ #Positivity there is no need for deprecating others with words, when it calls for~there is a need for compassion, it’s in you, #SirLRO
Read 246 tweets
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M.E. Australia
@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.”
Read 19 tweets
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Gwynn Dujardin
@PoesyProf
The selling of quick solutions is of a piece with disbelief in the medical (and general) community. Indeed, the fact that we use language such as "believe," the language of faith, speaks to more than the invisibility of the disease on our bodies & on conventional empirical tests.
There is a deeper aversion at work, which is facilitated by the word "fatigue," which people perceive as a transient state. "Fatigue" is something to be overcome, and our individualistic society cannot brook the idea that someone cannot master it w/o some flaw in our character.
But at some level I think people really *do get it: who hasn't had the nightmare of being unable to move in the face of a threat? These are *primal anxieties. I believe these deep-seated fears lie behind both medical/popular skepticism & the initiative to sell quick fixes.
Read 7 tweets

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