Dr Mark Guthridge Profile picture
Jul 10, 2019 10 tweets 11 min read Read on X
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
4. cognitive problems are widely observed in #MECFS where the brain's ability to process information is slowed and memory is impaired

Importantly, the impairments are simply not consistent with the presence of #psychiatric disorders

#chronicillness #chronicpain #pwME
5. The latest fMRI imaging findings show that the brains of #pwME have different responses to auditory/visual challenges and in memory

#MECFS patients also have altered connectivity between different #brain regions possibly explaining why they have cognitive impairment
6. The latest brain imaging studies also demonstrate that #pwME have widespread brain #inflammation (neuroinflammation) and increased brain lactate

Spinal fluid in #MECFS also contains increased levels of proteins involved in tissue injury and repair
7. Its not complicated!

#pwME lack “energy” because their cells have a problem generating (and/or possibly using) energy from oxygen (aerobic metabolism), sugars (anaerobic #metabolism), lipids (fatty acid oxidation) and amino acids

#MECFS #ChronicIllness #ChronicPain
8. many studies have reported that #MECFS patients have immune problems

For example, blood levels of proinflammatory signalling proteins (cytokines) are significantly higher in #pwME

AND, the sickest patients have the highest levels of #cytokines in their blood
9. Lastly, multiple studies have shown that with exercise, #pwME become sicker, they have increased levels of proinflammatory #cytokines, have a lower heart rate, blood pressure and have lower aerobic metabolism

#MECFS #ChronicIllness #medtwitter
10. The above scientific evidence demonstrates that #MECFS patients have a range of biochemical impairments that are:

1 Simply not possible to fake!!
2 Not due to deconditioning
3 Not due to #depression

more details in @JAMA_current
#medtwitter ja.ma/2xF3WNT

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More from @Dr_M_Guthridge

Jul 1, 2020
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
Jun 25, 2020
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
Apr 21, 2020
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
Apr 13, 2020
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
Apr 10, 2020
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
Mar 14, 2020
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

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