Dr Mark Guthridge Profile picture
Research Scientist (PhD) examining #immunology, #metabolism, #hematology #CancerResearch, #cytokines. #MECFS. Views are my own. Tweets not medical advice
Tim Anfilogoff Profile picture Twitter author Profile picture Ciska Profile picture 3 added to My Authors
1 Jul 20
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
3/ #pwME have an impaired ability to increase their oxygen consumption during exercise

This is entirely different to every other disease we know including cardiovascular disease, lung disease, end-stage renal disease, hypertension & cystic fibrosis

…nslational-medicine.biomedcentral.com/articles/10.11…
Read 11 tweets
25 Jun 20
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/
3/ And, the graph below shows that #MECFS research is woefully underfunded compared to similarly burdensome diseases

Note: the vertical Y-axis scale on the graph is logarithmic

So #IBS and #pneumonia actually receive 10x MORE funding than #MECFS

pubmed.ncbi.nlm.nih.gov/32568148/
Read 9 tweets
21 Apr 20
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
3/ Like SARS and MERS viruses, #SARSCoV2 likely enters the brain using axons or blood cells as ‘trojan horses’ to avoid immune detection

Once #coronavirus has breached the ‘immune-privileged’ brain, there is the potential for persistant infection and ongoing severe disease
Read 6 tweets
13 Apr 20
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…
4. Doctors felt that #pwME had a poor work ethic

5. Doctors felt that #pwME had a poor attitude, they lacked stoicism and did not make every effort to get better as quickly as possible

#chronicillness #MedEd
bmj.com/content/328/74…
Read 8 tweets
10 Apr 20
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…
3/ No responsible government should expose #chronicillness patients, cancer suffers, immune suppressed and the elderly to a #covid19 Mitigation policy where unnecessary deaths are tolerated

China and S. Korea used Suppression policies where the goal was an R0<1.0

It works!
Read 6 tweets
14 Mar 20
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…
3. ...an increased risk of developing #MECFS has already been associated with a previous viral #pandemic

This study found that young/healthy people were just as likely as the elderly to develop #MyalgicE following in an #influenza pandemic

#coronavirus
sciencedirect.com/science/articl…
Read 8 tweets
5 Feb 20
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…
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…
Read 11 tweets
16 Jul 19
#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
10 Jul 19
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
8 Mar 19
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
3. Breuer claimed that he cured Anna O of #Hysteria using 'talking out' therapy (a very early forerunner to #psychotherapy)

His claim was false

#InternationalWomensDay
ncbi.nlm.nih.gov/pmc/articles/P…
Read 13 tweets
26 Feb 19
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
9 Feb 19
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
3 Feb 19
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
26 Jan 19
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
27 Dec 18
Do you have Postural Orthostatic Tachycardia syndrome #POTS?

Approximately 25% of patients with #MECFS also have #POTS

This @FrontPediatrics study shows that a SHORT tilt table test fails to diagnose #POTS accurately

#pwME
frontiersin.org/article/10.338…
This large @FrontPediatrics study finds that only a full TEN MINUTE tilt table test accurately diagnosed ALL #POTS patients

#MECFS #pwME
frontiersin.org/articles/10.33…
nearly half of #MECFS patients have severe cardiovascular symptoms that require treatment/management

@FrontPediatrics study found:

25% of #pwME also had #POTS
17% of #pwME also had #orthostatic intolerance #OI
<1% of #pwME had fainting spells

frontiersin.org/articles/10.33…
Read 3 tweets