1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worse

How can exercise be so bad for #pwME but so good for almost every other serious illness?

THREAD 2/ New study by @4WorkWell @sunsopeningband et al shows that #MECFS patients have metabolic defects that cannot be explained by exercise phobias, deconditioning or 'illness beliefs'

#pwME have reduced oxygen consumption during exercise tests
buff.ly/2CXH6Hj

1/ How neglected is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research?

@NIH funding for ME/CFS in 2017 was ~$25mill

Fair funding relative to disease burden should be ~$350mill

That means #MECFS research was short-changed by $325,000,000 (14-fold!) in just ONE YEAR 2/ Buckle up!

@CenterRes analysis found that even though the disease burden of #MECFS was double that of HIV/AIDS, #AIDS research received ~$5billion in 2017

Thats a 20-fold shortfall, amounting to ~$4,975,000,000 lost #MECFS funding in just ONE YEAR!

pubmed.ncbi.nlm.nih.gov/32568148/

Thread: #SARS_COV_2 infects the brain

@NEJM study found >50% of #COVID19 patients had neurologic involvement including encephalopathy, agitation, confusion & corticospinal tract abnormalities

Immune activation in the cerebral spinal fluid was observed
nejm.org/doi/full/10.10… 2/ #SarsCov2 can infect the brain and muscle

This @jama study found that patients with severe #COVID19 were more likely to have neurologic symptoms including acute cerebrovascular disruptions, impaired consciousness, and skeletal muscle injury
ja.ma/3ezlAqE

Thread:

12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

1. Doctors tended to see #pwME as having “certain personality traits"

#SickNotWeak #MedEd #MedicalTwitter
bmj.com/content/328/74… 2. Doctors felt that #MyalgicE lacks a plausible pathological mechanism and its symptoms couldn't be ascribed to a precise location

3. There has been variation in the diagnostic criteria for #MECFS which has delegitimised the disease

#SickNotTired
bmj.com/content/328/74…

1/ The Australian Fed government is using #COVID19Aus ‘mitigation’ modelling which permit ‘controlled burns’ of #SARSCoV2 through the population resulting in unnecessary deaths

doherty.edu.au/uploads/conten… 2/ Current federal government #COVID19Aus policy is based on 'mitigation' modelling where the #coronavirusaustralia is allowed to spread with a reproductive number R0 of >1.0 which would allow 10s-of-1000s of unnecessary Australian deaths

doherty.edu.au/uploads/conten…

1. thread: #coronavirus and #MECFS

We know that #MECFS can be triggered by a range of viral pathogens

So it is likely that #coronavirus could trigger a worldwide spike in ME/CFS in the next 6-18 months

@bmj_latest
bmj.com/content/333/75… 2. Post-infection #MECFS has been reported following infection from brucellosis, #EBV (mononucleosis), #LymeDisease, Q-fever, Ross River virus, viral meningitis, dengue fever and...

sciencedirect.com/science/articl…
bmj.com/content/333/75…

1/ Thread

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…

#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

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

Thread. Medical Hysteria and #InternationalWomensDay

In 1882, Anna O is considered 'patient zero' for the diagnosis of "Hysteria"

#Hysteria was originally a diagnosis only given to women

Anna O fell ill in 1880 after her father died, possibly of Tuberculosis 2. Her symptoms: severe 'nervous' #cough, paralysis, numbness, vision/hearing/speech disturbances, hallucinations, #cognitive difficulties

She was diagnosed with "Hysteria" by Breuer and Freud in ~1882

#InternationalWomensDay

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…

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/…

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…

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…