From November folder
December 16th, 2017
6 / Tweets
Thread on PTSD and housing ME with VanElzakker
LInk: https://twitter.com/mbvanelzakker/status/941332569227956224
Exercise is harmful study
https://twitter.com/adambeyoncelowe/status/937256593187581952
https://twitter.com/positively___me/status/937281661183684608
Microbes and Mito
https://twitter.com/microbeminded2/status/935656305460617216
https://twitter.com/adambeyoncelowe/status/940520240034865154
I agree too. People use it as a panacea. Stems from the political belief that illness and disability are social and behavioral. That patients only need rewiring to want to be 'productive' members of society again.
Things that were allowed in 1960:
- Jim Crow
- lobotomies
- forced sterilization
- child abuse
- lead in paint
- lead in gasoline
- cars without seatbelts
- DDT
- smoking on planes
- drinking and driving
https://twitter.com/annieelainey/status/941392361216716800
5 / From September/October Folder
Tweets 4
Sarah Myhill Refovery
https://twitter.com/coyneoftherealm/status/925280895921283072
Period hormone types tweet thread
https://twitter.com/disabilisaur/status/926839387131871232
Me worse than MS TWEET
https://twitter.com/wakebutsleeping/status/928932396300414976
Well done! I hope this helps other doctors understand that psychogenic diagnoses should not be used as placeholders until mechanisms are revealed.
Pathways
https://twitter.com/mecfsnews/status/931986381269762049
Kooky MS Liberation trial
https://twitter.com/erictopol/status/931912582612447232
Don't walk too much with ME
https://twitter.com/positively___me/status/935431162641768448
4 / Tweets 3
https://twitter.com/mecfsnews/status/922818358160056320
There needs to be a serious research effort to find answers. The policy to treat it as psychological problem amounts to a policy of neglect.
Young people are struck down by this illness and we don't know why or how to help. This is unacceptable and needs to change.
Unrest
Global community https://twitter.com/mavanschijndel/status/923201097543684096
https://twitter.com/truefubar/status/924323380500877312
Unrest Parliament
https://twitter.com/scottfilmcritic/status/922848691727294466
https://twitter.com/rachhillier/status/922878516970049536
https://twitter.com/marktamimp/status/923123679306960896
https://twitter.com/menortheast/status/923233453998596097
https://twitter.com/myblondevoyage/status/923918699219881984
https://twitter.com/jenbrea/status/923563711612309507
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https://twitter.com/mavanschijndel/status/923201097543684096
one day students will read medical books on how a global community of #pwME and their supporters once fought for change, and won.
#mywish
Cellular bioenergetics kindlon thread
https://twitter.com/tomkindlon/status/922913584899751936
The metabolic differences discovered, highlight inability of #mecfs patient Peripheral Blood MCs to fulfil cellular energetic demands. #pwme
Good agreement between abnormalities (low reserves, low max. respiration) and lived experience.
'Acquired mitochondrial dysfunction (e.g. post-viral infection) has also been an area of research interest [20–23].' #timeforunrest #pwme
So, Tom, a question, does that mean that jogging will fix us or no?
https://twitter.com/thegodofpleasur/status/923264735088463872
Truth is Prof Crawley's work lacks scientific rigour. Criticism comes from well-informed pts, scientists & academics bit.ly/2gH3pGn
What's much more chilling is how she has sucked up mecfs funding for unethical trials on treatments that cause #pwme severe harms
Thanks for listening to the other side of the story. Biomed. research shows faulty energy metabolism in ME/CFS. EC ignores this, pushes kids to increase activity after initial cutback. Make sufferers much sicker. Refuses to use objective outcome measures in open label trials.
People with ME are mentally STRONG. We endure pain and suffering daily, whilst being judged, maligned & neglected #respect #MEAwarenessHour
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Great doctor thread about doctors
https://twitter.com/alanlevinovitz/status/923961054648045568
When there's inexplicable pain and you have to blame *someone*, women have been a historically preferred (read: easier) target. 2/2
the existence of such a thing, which involves making oneself vulnerable to it, you invent an etiology that puts you out of harm's way. 3/
https://twitter.com/daisy_court75/status/923970322667208709
Many etiologies
https://twitter.com/alanlevinovitz/status/923957267569037319
https://twitter.com/julierehmeyer/status/923956768127905792
BMJ: "Lack of energy in CFS may be caused by
autoimmune and metabolomic dysfunction that reduces ATP production." bestpractice.bmj.com/best-practice/…
https://twitter.com/julierehmeyer/status/923957467242889216
BMJ: "Exertional exhaustion is the critical aspect that distinguishes ME/CFS from other... fatiguing illnesses." bestpractice.bmj.com/best-practice/…
BMJ: "What appears to be deconditioning may in fact
represent inability to generate adequate ATP for muscular work" bestpractice.bmj.com/best-practice/…
3/ Tweets 2
Amy Proal
https://twitter.com/microbeminded2/status/919341950943215617
On "root causes" of mitochondrial dysfunction in ME/CFS. Intracellular #pathogens + metabolites they create can dysregulate human pathways
https://twitter.com/microbeminded2/status/919344424697524225
Studies show microbiome/metabolome/proteome/metatranscriptome/cellular metabolism dysregulated in ME/CFS. Every second on psychiatry a waste
A broken mind? Mind hs no form. Non visible, non material, like thoughts. Thought processes interrupted by dysfunctional chemistry=physical
Yes. Anything better than "disease induced solitary confinement": microbeminded.com/2015/11/25/dis…
Excellent example of #pathogen causing chronic symptoms at later date: Eye #disease, blindness "dreaded complication" in Ebola survivors
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Just because there are disabled people who fit your nice Inspiration Porn of ‘overcoming’ their disabilities - doesn’t mean shit
-cherry, not all disabilities can be overcome
This is a real problem within the disability community. There are some who would have you believe anything is possible. It's just not true.
https://twitter.com/stevenspohn/status/921822688187953152
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Just watched #unrest thank you @jenbrea for showing the world our missing lives
https://twitter.com/weavingheartuk/status/921727188503842817
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Be afraid-this can happen to anyone. Virus hit me Oct 1999-never recovered-Myalgic Encephalomyelitis-your worst nightmare-no relief in sight
https://twitter.com/joanmcparland/status/921447925812736000
Videos of review quotes unrest
https://twitter.com/unrestfilm/status/921449910280519682
UNREST is a tender, bracing piece of activism, I was also on a jury that gave this an award at @sheffdocfest
Thread on heart rate and pacing
https://twitter.com/meassociation/status/921810495568580610
Jen on treatment and research
Once I did a VO2 max test and received the advice to keep my HR below 100 bpm, it really helped me learn how to pace.
Some days I'd wake up with a resting HR of 72 pbm. Sometimes it was 120 bpm just from lifting my head.
It helped me to know "this is a day I can get out of bed and do a bit" and this is a day I can't.
I think is incredibly important to meter activity based on physiological responses, not subjective ones
So find out patients' VO2 max (for those who are well enough to actually do the test). Teach patients about HR monitoring.
And use objective outcomes in research. Citric acid cycle metabolites are a good start. Amino acids, lactate, etc.
And research designs incorporate 2-day CPET, which is now becoming the gold standard.
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I use 'consciously' for numerous reasons: Is Dr aware definition is broad, unspecific & could encapsulate patients with varying conditions?
https://twitter.com/meawareness/status/922038483119759361
Unrest review
https://twitter.com/jessclaremiller/status/922211233331367938
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We need to have an in-depth inquiry into how a known illness gets turned into mental health against all evidence
I think it's called "sweep it under the rug to save $"..psych services much cheaper than biomedical research and physical illness treatments
https://twitter.com/tinarodwell1/status/922137944936329216
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@daisy_court75 also a thought is mast cells acting out badly b/c great dysfunction caused by energy bankruptcy frm mitochondrial dysfunction
Seems massive fatigue&ill health then comes MCAS,frm wat I've heard.I've had bad environmental allergies since lil,til antigen shots,no MCAS
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https://twitter.com/melifeinatweet/status/922441698743070720
@jenbrea Am wondering your view on the mind/body connection. Obviously ME is physical illness but what part can psychology play in healing?
I think LP works for ppl whose CF symptom is caused by emotional/mental stress/trauma as it's not neuro/mito abnormality, but psychological
I am offended by the term "brainfog". It is trivial and does not represent the severe alterations of memory & consciousness that I have had. Rob solystik
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Tweet from uk doctor about aerobic threshold
https://twitter.com/drphilhammond/status/922116242722508801
And the reverse true too - ME cells ok when put in healthy serum. Important finding for #mecfs #pwme #millionsmissing
https://www.healthrising.org/blog/2016/11/17/iacfs-me-energy-exercise-metabolomics-chronic-fatigue-syndrome/
"The knowledge gap in #MECFS compared to other diseases is directly correlated with financial investment." @znsolve #DiscoverMECFS17
https://twitter.com/plzsolvecfs/status/919223334553964544
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"It is unacceptable, in the 21st century in the U.S., that 100s of 1000s of people fall ill & we don't know why." #MECFS #DiscoverMECFS17
"It is unacceptable in the 21st century in the United States that hundreds of thousands of people fall ill and we don't know why."
Zaher Nahle, Chief Sci Officer of Solve ME/CFS Initiative. Sorry couldn't fit, but check the hashtag in that tweet for more info.
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“We are all temporarily abled. Disease, age, and injury can change that at a moments notice.” @sublimemarch #GitHubUniverse
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https://twitter.com/mecfsquestions/status/919536696265465856
Funding must increase. Other comparable diseases get 20x the funding or more with fewer patients. No surprise the situation is what it is.
And the logic behind the lack of funding appears to be backwards. It should be funded BECAUSE it's poorly understood.
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https://twitter.com/plzsolvecfs/status/919226771626713088
“T-cells from #MECFS are using significantly less respiratory capacity. But, we don’t know why.” - @DrMaureenHanson #DiscoverMECFS17
Oh I think we have some idea why: some molecule in the blood is interfering with metabolism.
we dont know - could be pathogen intra-cellular, could be mitchondria, - but reduced T-cell function is clearly a serious finding to explore
Or, an intracellular pathogen could dysregulate human celullar metabolism/receptor activity - resulting in mitochondrial dysfunction ☝️
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Anton Mayer:
When a disease is forgotten by medicine, exploitative quacks run the show.
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"The demand of patients far exceeds the number of physicians specializing in this disease." - Dr Dan Peterson, re #mecfs #DiscoverMECFS17
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https://twitter.com/richardvallee/status/919965894847197184
This is the typical experience for millions of #MECFS patients. Denial, contempt and indifference. Unbelievable that it could go on in 2017.
Thanks for sharing. This is the only way awareness will build up. Medicine is systematically failing millions of very ill people.
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https://twitter.com/humanpersonish/status/920057877435502593
It’s not easy to capture something invisible. Watching @unrestfilm was the first time I’ve ever seen my illness reflected on screen #mecfs
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Absolutely stellar. Thank you so much for this. I've had a LOT of therapy and my therapist who had very visible RA said after two sessions "it's clear you have no mental disorder. Now let's help you find a way to cope with this difficult life." Beautiful writing.
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https://twitter.com/caatdolan/status/920282503511932933
This is a beautiful, heart wrenching, enlightening film about a disease hidden in plain sight. Absolute must see. #
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Housebound millions missing shoes
https://twitter.com/meepsmeepsmeeps/status/919055654727413765
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Depressing suicide quote
https://twitter.com/kittybrewster/status/920690619152035840
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Ron Davis molecule quote
https://twitter.com/roberthmcmullen/status/921023400746848257
Tweets from ME Twitter
ME Unrest Resources tweet:
https://twitter.com/meactnetau/status/918339575465914368
2 / Twitter thread
https://twitter.com/mbvanelzakker/status/917427735571714048
It's really interesting because in my research (as opposed to clinical) bubble, everyone I talk to is interested.
Yes, hard to understand. But as of now even well-meaning docs feel like there aren't options (I don't think it's true but that's the story)
I think relentless focus on the "controversies" of this condition fuels the (wrong) perception that it's just some huge impenetrable mystery
The "mystery" narrative is pesky. For a while I was noticing that popular press coverage of new ME/CFS research (if any) would often say...
"this new discovery deepens the mystery [of ME/CFS]." NO IT DOESN'T IT'S NEW INFORMATION THAT *LESSENS* THE MYSTERY YOU DOINKS.
I often encounter attitude (even or especially from doctors) that this disease isn't just full of unknowns, it's *fundamentally unknowable*
They are taught in med school in one way and they are rigid. Majority forgot connection between immune system (2nd brain) and the brain.
Anybody who went to med school before about 1997-2000 simply did not learn about vagus nerve as communicator btwn nervous & immune systems.
It hadn't yet been discovered.
Bechets Twitter thread
https://twitter.com/dougdaulton/status/917608771576139776
1/ Twitter threads and tweets
https://twitter.com/mbvanelzakker/status/917418714731073536
Digging in to the relationship between immunology and cellular metabolism (#immunometabolism) is going to be a key in understanding #MEcfs.
There is evidence that immune cell metabolism in ME/CFS is altered. Common theme seems to be reduced oxygen dependent metabolism.
One study reported increases glycolytic (non mitochondrial) energy production:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5065105/
As far as I understand a shift towards glycolytic energy production is called the Warburg effect and helps immune cells proliferate.
We'll be focusing on oxygen use by brain & body during our exercise challenge study.
I'm a big supporter of exercise challenge studies. It's without a doubt one of the most promising lines of research.
Doing both hypercapnia and O2 challenges in the scanner before & after the challenge; the challenge itself is invasive meaning we will ...
...sample from radial & pulmonary arteries during exercise - this allows ongoing sampling of fully oxygenated vs fully de-oxygenated blood.
Lots, but for this ? we can look at gas content: If healthy controls use X% of their blood O2 during exertion, how much do patients use?
https://twitter.com/mbvanelzakker/status/917428025741934592
We will need funding to be able to run healthy comparison controls. Each exercise test costs about $13,000 to run - not including MRI time.