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Dr Mark Guthridge
@Dr_M_Guthridge
, 20 tweets, 31 min read Read on Twitter
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…
3. Some #MECFS diagnostic criteria don’t even require #PEM, surely its not important

No

The Oxford and Fukuda Criteria don’t require #PEM which is part of the reason that the @NIH want such definitions to be “retired”

#chronicillness #pwME #MyalgicE
bit.ly/2DkVu96
4. #MECFS and #PEM is psychological

No

The @NIH position paper on #MECFS states #pwME “.are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder”

@AnnalsofIM #medtwitter
bit.ly/2GdaYQt
5. #PEM is simply what happens when sedentary #MECFS patients exercise

No

These @PLOSONE studies show that exercise triggers a sustained #immune inflammatory signature in #pwME that is distinct from that in sedentary people

#SickNotWeak #SickNotTired
dx.plos.org/10.1371/journa…
6. #MECFS patients are simply ‘catastrophising’ about exercise

No

In a 2-day #exercise #CPET assay, #pwME showed significantly lower values for O2 consumption on day 2 which is consistent with an exercise-induced impaired aerobic capacity and #PEM

tandfonline.com/doi/abs/10.130…
7. #MECFS patients are deconditioned

No

These #exercise studies show that #pwME have “an increased reliance on glycolytic #metabolism and.. increased.. lactic acid.. [so] work intensity cannot be maintained, resulting in the reduction.. of activity.”

academic.oup.com/ptj/article/93…
8. It is not possible to get #PEM from simply showering or cooking

No

In #pwME where aerobic #metabolism is impaired, the requirement for “anaerobic energy even for normal.. daily living precipitates the symptom exacerbation seen in #PEM”

#SickNotWeak
academic.oup.com/ptj/article/93…
9. #MECFS patients are malingerers who fake #PEM

No

“Physical therapists should be aware that the postexertion state in #pwME is characterized by.. measurable deficits in.. #metabolism & workload that would be nearly impossible.. to fabricate.”

#MedEd academic.oup.com/ptj/article/93…
10. My doc insists GET allows recovery if I push through my #PEM

No

"..aerobic energy.. processes fail to respond normally to #exercise.. in #pwME.. [so] incautiously applied #GET is likely to result in exacerbation of.. symptoms”

#SickNotWeak #MECFS
…nslational-medicine.biomedcentral.com/articles/10.11…
11. There is no objective way of measuring #PEM

No

@BioMedCentral studies found a significant decrease in the maximal O2 pulse following #exercise “..indicating compromised O2 delivery in #MECFS patients following induction of post-exertional malaise”

…nslational-medicine.biomedcentral.com/articles/10.11…
12. There is no scientific basis for #PEM

No

“After induction of #PEM, the threshold lowers at which anaerobic #metabolism accelerates in #MECFS [causing] premature anaerobiosis in #pwME.. further reducing the ability to do work”

@BioMedCentral #MedEd
…nslational-medicine.biomedcentral.com/articles/10.11…
13. Exercise is beneficial in many diseases, including #MECFS

No

“#pwME currently represent a unique class of.. patients who do not reproduce maximal #CPET [exercise].. unlike [in] cardiovascular.., lung.., ..renal & pulmonary.. diseases”

#SickNotWeak
…nslational-medicine.biomedcentral.com/articles/10.11…
14. #GET clinical trials for #MECFS didnt report adverse events or #PEM

No

“Most studies failed to report on.. adverse reactions.. This might be.. why outside of clinical trials.. many #pwME [are] reporting deterioration with GET”

@Huisarts_Vink #MedEd ncbi.nlm.nih.gov/pmc/articles/P…
15. #PEM symptoms are vague and not diagnostic

No

“Using a binary.. regression model, only 4 post-exertional symptoms (fatigue-, #immune-, #sleep-, and #pain-associated symptoms) were needed to classify 92% of #MECFS.. accurately”

@PLOSONE #MedEd #pwME
dx.plos.org/10.1371/journa…
16. #pwME just dont want to #exercise, it has nothing to do with #PEM

No

“Based on the O2 uptake.., #pwME.. recovery after 24h was not completed.. This indicates an impaired recovery.. [due to].. postexertional malaise”

#SickNotWeak #SickNotTired
…nslational-medicine.biomedcentral.com/articles/10.11…
17. brain function in #MECFS cannot be affected by #PEM

No

“..exercise.. impaired cognitive performance and affected #brain function in #pwME.. [providing] objective evidence of the detrimental neurophysiological effects of post-exertion malaise”

sciencedirect.com/science/articl…
18. Physical deconditioning helps to maintain physical disability in #MECFS

No

These studies found that “..the value of the increase of cardiac output relative to the oxygen uptake.. is independent from motivation and deconditioning”

@BioMedCentral
…nslational-medicine.biomedcentral.com/articles/10.11…
sorry to scientists if I overlooked your biomedical studies of #PEM in #MECFS

Feel free to add additional scientific studies describing the biological basis of #PEM to this thread

#pwME #MyalgicE #SickNotWeak #SickNotTired #chronicillness #MedEd #medtwitter
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Related hashtags

#PEM #MECFS #SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd #exercise #sleep #MyalgicE #immune #CPET #metabolism #GET #pain #brain

More from @Dr_M_Guthridge see all

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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
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets
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Dr Mark Guthridge
@Dr_M_Guthridge
Thread:

The 10 publications below provide scientific evidence that patients with #MECFS have #brain abnormalities in #neuroinflammation, #metabolism, #neurological connections and blood perfusion

#pwME suffer from #chronicillness

#pwME are #SickNotWeak
1. These studies “provide evidence of #neuroinflammation in #MECFS.. as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of #MECFS”

#pwME

jnm.snmjournals.org/content/55/6/9…
2. This Australian study found abnormalities in the #brain MRIs and peripheral Blood Pressure and Heart Rate in #MECFS patients including the Vasomotor centre, midbrain and hypothalamus

#pwME

sciencedirect.com/science/articl…
Read 14 tweets

Related threads

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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
Profile picture
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
Profile picture
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
Profile picture
Jennifer Brea
@jenbrea
The heavy-handed (totally out of context) physician commentary on the cases of patients they have never seen or interacted with is so irresponsible. #Afflicted
I have *never* heard of some of the doctors commenting on Jamison's case. This means they don't regularly see ME patients, don't research the disease, and have zero clinical or research expertise. #Afflicted
They filmed at a Stanford symposium that included top researchers from around the world, yet decided to use totally unrelated, nonexpert interviews to comment on Jamison's case in order to convey a POV that fit their narrative. #Afflicted
Read 106 tweets
Profile picture
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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