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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

Is it really that bad?

Trigger warnings: The studies below paint a very bleak picture

#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
2/ Full recovery from #MECFS is rare

The median recovery rate from multiple published studies is 3-7%

(just 1 paper linked below)
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter
academic.oup.com/occmed/article…
3/ ~25% of #MECFS patients are housebound or bedbound.....

....sometimes for decades!

That means no work, no vacations, no social life, lost time, lost goals, lost relationships.....

journals.sagepub.com/doi/abs/10.117…
4/ Many ME/CFS patients are too sick to work

#MECFS is so disabling that only ~13% of patients are able to maintain full-time employment (FTE) compared to 70% FTE prior to disease

#SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness
link.springer.com/article/10.100…
5/ The quality of life for #MECFS patients is measurably worse than patients with other serious diseases/illnesses including cancer (all), stroke, lung diseases such as COPD, renal failure and heart attack

@PLOSONE #ChronicIllness #MedEd #MedTwitter
dx.plos.org/10.1371/journa…
6/ The #suicide rate for #MECFS patients is nearly 7x higher than the general population

Not surprisingly, the level of disability, loss of quality of life, loss of employment, the social disconnection can be devastating

@TheLancet #MedEd #MedTwitter
thelancet.com/journals/lance…
7/ Having #MECFS is like "being ruled by an unfamiliar, inexplicable body"

"Being ill for a long period of time often means living a
restricted life with limited participation in social settings and less shared activities with other people"

#MyalgicE
tandfonline.com/doi/abs/10.108…
8/ ME/CFS patients often face stigma and disbelief

As many as 31% doctors do not believe that #MECFS is a distinct syndrome

#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
ncbi.nlm.nih.gov/pubmed/10721550
9/ #MECFS patients face enormous difficulties just getting a diagnosis

Over 80% of patients remain undiagnosed or misdiagnosed more than 2 years after disease onset

#MyalgicE #SickNotWeak #pwME #ChronicIllness #MedEd #MedTwitter #SickNotWeak
ja.ma/384ESAw
10/ #MECFS patients are disabled but most cannot get disability benefits

despite the long-term disabling nature of ME/CFS that leaves many patients unemployed and housebound, most dont qualify for disability benefits in many countries

#ChronicIllness #MedEd #MedTwitter
11/ #MECFS patients are sick.....

...very sick.

They need care, respect, acknowledgement and support

#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
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Related hashtags

#MECFS #MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #suicide

More from @Dr_M_Guthridge see all

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Dr Mark Guthridge
@Dr_M_Guthridge
#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
Read 8 tweets
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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. Sturg
@DrSturg
#Thread It will be a bit of an historic week, with the beginning of open hearings on #impeachment. Here's some things I've learned that might help you make sense of them.
2/ My job during the Clinton #impeachment hearings involved sitting in a newsroom with TVs on for many hours every every day. It was an experience that was both fascinating and dyspeptic.
3/ I'd leave work each day with the same thought: "It's not about the sex! It's about the lying!!!" It was unbelievably frustrating to watch members of Congress, who you KNOW know better than this, make tons of bad-faith arguments.
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Jennifer Brea
@jenbrea
Doctors who follow me:

I’d love to write a small note to the doctors who diagnosed me with conversion disorder, told me I was too young to be sick, that I wasn’t really sick, that I didn’t need a wheelchair, that I would never end up bedbound,
That there was absolutely nothing wrong, that I should stay off the internet, that the symptoms I reported were impossible, that what I really needed was a psychologist, that the articles I brought them to read were irrelevant, that it was OK for my husband to divorce me,
that they were the ones who’d rescue me, that they’d have me up and skiing in no time, that what I really had was most certainly L,M,N,O,P,Q,R,S,T,U,V.
Read 13 tweets
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Jennifer Brea
@jenbrea
So many parallels to #pwme in Europe forced into graded exercise. Push people past their limits, then give a form of CBT to disabuse of them of the “false belief” that exertion is killing them. Here, put teens in pain in more pain and then forbid them from talking about pain.
Here is the original piece. This should always be a warning sign: “It mostly affects girls, though a small number of the cases are in boys” that we are about to see failure to diagnose lead to psychologization and medical abuse.
Doctor: “American medicine now routinely asks patients to rate their pain on a scale of 1 to 10, and treats it like an emergency, [this] has led to more pain in our society”
Read 16 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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Jeff
@jeff_says_that
@awardewithwords Hi, here's a thread of articles to get you started. Many people have expressed interest in this. I'm going to update my website to include links.
@awardewithwords Deformative stress associated with an abnormal clivo-axial angle: A finite element analysis:
ncbi.nlm.nih.gov/pmc/articles/P…
@awardewithwords Utility of the clivo-axial angle in assessing brainstem deformity: pilot study and literature review
link.springer.com/article/10.100…
Read 4 tweets
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Jennifer Brea
@jenbrea
I don't know who wrote this but this is absolutely false and deeply embarrassing for @SMC_London: sciencemediacentre.org/cfsme-the-illn… which has shown again and again that it has absolutely no respect for science and is willing to mislead the media by promoting pseudoscience.
First, on the idea that is is somehow a battle between the medical community and "campaigners..."
.@owasow and I were hanging out with friends last weekend, one of whom happens to be a social psychology professor. We were discussing the the replication crisis in her field and completely unprompted she brought up the PACE Trial. @SMC_London
Read 40 tweets

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