Scientist & chronic illness advocate raising awareness of environmental research for ME/CFS & more. Let's drive change together!
#ChronicIllnessAwareness
My advocacy presentation entitled:
"Environmental Contributions to ME/CFS & Long COVID".
Many years of research to produce these results, and many months to assemble the presentation, just hoping this gets properly funded!
@elonmusk
I find it surprising that you find it surprising that sucking all the wealth out of the lower class so you can solely control it and making the cost of living unaffordable has deterred people from having children
Very disappointed in Dr. Avi Nath's comments today:
"The population affected by long COVID is so much larger, and symptoms are so much more severe compared to ME/CFS that we decided that what we should do is focus on long COVID."
Would he like some photos of ME/CFS patients?
Tired of listening to these doctors and physicians holding webinars telling patients to “eat a healthy diet and focus on conditioning” in order to improve… Some of the healthiest athletes in the world are still getting horribly sick from ME/CFS & Long COVID… you think they
@SandraHolmberg3
@elonmusk
Crazy how some people think that I’ve made a political comment by objectively acknowledging he has accumulated an egregious level of wealth… Stating facts isn’t an opinion or philosophy, no wonder we’re so divided.
@KevButterworth
@elonmusk
Chronic illness rate is up from 6% to 60% of the adult population in less than 100 years. You have to be rich just to get by.
When ME/CFS patients say that “It feels like there’s cement in my blood”, what if they were unintentionally being truthful?
I request a formal investigation of the role of particulate matter in ME/CFS, clogging lymphatics & interstitial spaces (which is why perfusion is poor),
Genuine question:
If you knew the root cause of ME/CFS, beyond a shadow of a doubt, but even if you told people, they wouldn’t believe you, what would you do? Do you just keep trying to tell people or do you give up?
Attended a wedding yesterday, and including myself, there were 3 people out of the 50 present who had medically diagnosed Chronic Fatigue Syndrome. This is not a rare condition.
@annitht
Appreciate that! I want all the chronic illness communities working together (MCS, POTS, FM, etc) and research studies to use all subgroups as controls so we all get answers and use funds more effectively
@granejane
@PatientDreams
I’m at the point where I don’t mind if people publically call out comments like that on webinars. You can’t make those comments and get away with it, he needs to be held accountable, people’s lives are at stake.
@SenSanders
It is unacceptable to put $10 billion into long covid, and nothing into fibromyalgia, me/cfs, multiple chemical sensitivity, pots, etc. All these patients suffer just as much. Please be a hero for all of them
This message is to healthy people who have a friend who recently developed a chronic illness they don't understand:
Don't abandon them, or keep your distance. Support them harder. They need you. Reach out. They need that love to keep them going.
@PeonyLeaves905
When researchers can even display intelligence regarding the condition they’re treating, then we can’t trust the results or mechanism they’ve proposed either.
IT'S DONE! After years of work, finally have published my video explaining my research results and discussing root cause. PLEASE watch, like, subscribe, and share to help me spread this word and reach the researchers!
#mecfs
#longcovid
#mcs
#pots
Personal post:
This is what before and after ME/CFS looks like for me. Zero help from my employer, from friends, from the government, and from doctors. You get ill, and you’re just fucked.
@zalaly
I developed ME/CFS back in 2017 and I remember initially being in the hospital, and was shocked when millions of people have had this condition for decades, yet no doctor or researcher ever compiled recommended reflex testing, or most beneficial treatments… every new patient is
A couple years ago I surveyed multiple ME/CFS groups to see what medications/treatments they found beneficial. Sharing with everyone in case this helps anyone.
Interesting protocol for treating tethered cord in ME/CFS, using frequency specific microcurrents (FSM) to destabilize the tether until it separates, and then GK-Cu to restabilize after the tether separates.
When I first became ill with Chronic Fatigue Syndrome, I remember saying "Well, at least I don't have Multiple Chemical Sensitivity so I don't have to change my lifestyle".
It took me 4 years to realize the environment was driving my symptoms. It's not obvious.
@Greg54783235113
@elonmusk
Have you ever lived with a chronic illness that leaves you bedbound? Millions of Americans have that. Just because you had that opportunity doesn’t mean everyone does.
@ishbelfrazer
LMAO. Every single person with ME knows its physical, I've never heard of a single person who thinks its psychological that has the disease. More researchers that won't listen...
@Raks54672917
@elonmusk
In America, the cost of living is substantially higher than Africa. New kid? Need a new room, need new life insurance, need to spend more on food, need to drive them around, need to pay medical bills, etc. people don’t want to bring a child into the world that’s living in the
When it comes to farming, if you have a sick plant, the assumption is always an environmental problem: lack of sunlight, mold, poor nutrients, etc.
When it comes to people, the assumption is it’s never environmental. We all just have these random genetic problems that are
@DaniBeckman
Twitter can have some aggressive/close-minded commenters, but it’s partially due to researchers, legislators, and advocacy leaders repeatedly ignoring these patients and gaslighting them
@SurvivingCFS
The problem with the severity scale is that people only refer to functioning, which can mean many different things because symptoms are so heterogenous. But it doesn’t refer to suffering level, which can be severe while functioning is still relatively high.
Hear my comment to the NIH during their webinar on Clinical Research Engagement. I think it was well received; my comment was the only one the panel discussed at the end and had them nodding in agreement.
This is how we make change: DON'T BE AFRAID TO SPEAK UP!!!
@dsethlewis
Patients are about 25 years ahead of doctors when it comes to understanding this disease, but doctors think patients are too stupid to know anything.
@morganstephensa
@POTUS
Excellent thank you. Please also advocate for ME/CFS, fibromyalgia, and other chronic illnesses with no medical awareness or funding, they all desperately need attention.
@pausedME
It’s easy to feel a kind of ‘high’ when you’re improving, but please make sure you maintain pacing and pay attention to what your body is telling you so you can keep all the strides you’re making!
@Naomi_D_Harvey
I would LOVE some collaborators. Or even just the opportunity to sit at a table with some researchers and tell them what I know. They get so many people telling them wacky theories however that the barrier to get that is very high
Just wanted to take a minute to thank everyone on this platform for every comment and piece of feedback you’ve given me. Even if in disagreement, that has been what has kept the conversation going, and without it I’d just be talking to a wall. I appreciate everyone in this
@useless_priest
I can’t speak for women, but in my personal experience, I have been afforded no consideration, proper care, or belief. I’ve had to fight my way through the system the entire time. It’s been awful.
Will be speaking up for the patient community tomorrow at the NIH Webinar. My top priority will be the most productive use of research funds to benefit patient quality of life. I hope to sufficiently represent and honor our community. I know how much everyone is suffering.
@ahandvanish
There are potentially billions of biomarkers in the human body... I've seen hundreds of millions thrown into biomarker studies and the only thing thats come out of that is "there is an abnormality" without any understanding of why. Establishing causation is the only path forward.
So happy to see that NIH researchers are now listening, and have included the mechanism I have proposed for ME/CFS in their roadmap!!!
Feeling incredible relief that all my efforts are finally getting this information in the hands of the right people
@ChrisMurphyCT
It’s not just high prices, it’s inaccessible. The state of Connecticut has prioritized giving housing to illegal immigrants over those with disabilities, including those who are blind and in wheelchairs. I struggle to think about what they go through…
Until the 3-6 million people suffering with this horrible disease get adequate funding, diagnostic tests, treatments, and support, every single day is ME/CFS Awareness Day.
ME/CFS Awareness Day 2024 - thanks to
@oeg_mecfs
for organizing this important event today in Vienna. Each bed displayed represents
#MECFS
patients that miss their previous lives and have messages from them attached 💙
I remember when Long COVID got $1.5B in research funding and patients were saying "Do you think we'll get a cure in 2 years?"
Multiple years have gone by and not only do we not have a cure, but we haven't even made any progress.
Because we're not doing the right kind of research
I am so happy for the Long COVID community to get this wonderful opportunity for medical funding they desperately need. However, ME/CFS, POTS, MCAS, Fibro, and MCS patients suffer just as dearly. Please don’t leave them behind. Please advocate they get funding too.
For too long, millions of Americans suffering from long COVID have had their symptoms dismissed or ignored – by the medical community, by the media, and by Congress. Unacceptable.
Congress must act now. Yes. It is time for a Long Covid Moonshot.
@KevButterworth
@elonmusk
Not relevant to the point that financial status of lower class citizens is concerning. I never said it’s not important generally, which is obviously very much is.
@DaniBeckman
@KamalaHarris
The problem is these people say they care, but then they don't even show up to vote. They have a golf game that day, or whatever it is. If you can explain that she is different, and cares more about medical research than jailing Trump, Tiktok bans, and UFOs, I'd change my stance
Glad to see NIH Director is addressing LC, but unfortunately don’t see any mention of the tens of millions of Americans dealing with ME/CFS, POTS, MCAS, Fibro, Multiple Chemical Sensitivity, etc with just as severe cases and zero funding.
1⃣
#NIH
’s approach to evaluate therapeutic interventions for
#LongCOVID
is evolving. We will apply lessons learned from initial
#NIHRECOVER
studies & trials to develop a new program called RECOVER-Treating Long COVID (RECOVER-TLC).
Today I called Bernie Sanders' office and requested ME/CFS, Multiple Chemical Sensitivity, Fibromyalgia and POTS (which have almost zero funding) specifically be added to the moonshot legislation; Solve asking for "associated conditions" isnt enough.
You can call at 202-224-5141
BREAKING: Senator Bernie Sanders drafts proposal for Long Covid Moonshot.
The proposal earmarks $10B in Long Covid research funding over the next decade.
I’ve been disabled since March 2021. I’ve been going through invasive, painful testing, giving my body to science for data ever since. It’s been over 2 years with NIH RECOVER. To date, no answers. No treatment. No recovery. But I did get this water bottle as a consolation prize.
@dysclinic
They're actually making a fantastic point, that the irregularities in autonomic function may be a compensation for vascular/anatomical/other changes rather than primary dysfunction.
New data out from the Younger Lab! They found that pain and fatigue were worse when the air quality index was worse. This had a statistically significant relationship, even in a flawed preliminary study! This is the beginning of proof, that environmental factors lie at root cause
@jason_isaia
This is a weighted survey from the community. If one person has a very bad reaction to LDN (which I have heard of several times), it will lower the score substantially. Whereas almost no one has a strong negative reaction to magnesium.
I’m trying to make a list of therapies that promote wound healing/connective tissue repair. Here’s what I have so far, please comment if you have any ideas to add!
-Vitamin C
-Red light therapy
-Hydrogen water
-Retinol
-Collagen supplement
-Infrared sauna
-GHK-Cu peptide
-Copper
"They found that women who cleaned as little as once a week had an accelerated lung decline risk. In fact, they said using cleaning products for 20 years is equivalent to smoking 20 cigarettes a day for 10 to 20 years for women."
.
Check out my interview with Ben, a person with long COVID now in remission to hear his story and how he recovered!
Thank you, Ben for having the courage to share it with the community and we are all very anxious to hear it!
If you have ME/CFS and feel there are no options for you and you’re ready to give up, just move to a place with better air quality. I know it sounds too simple to possibly help, but what do you have to lose?
For those of you that think chronic pain/Fibromyalgia is a neurological disease, then why is it that wherever I have sharp pain, it looks like bleeding underneath the skin in that spot?
@RorPreston
@Invest_in_ME
I worry substantially that that pathway may indeed be triggered, but as a protective mechanism. If you were to use that treatment on a human, consequences could be fatal.
I am so certain about the mechanism for ME/CFS that I proposed, that I’m willing to stake my entire reputation on it.
I will speak to any doctor, researcher, content creator, congressmen, or advocacy leader about it either publicly or privately at any time in any context.
TOMORROW! (Sunday) 1 PM EST, join this Twitter Space for a discussion on the science and research being done in ME/CFS and Long COVID!
[Co-host
@AaronCa11
]
Director Bertagnolli of the NIH, has decided to propagate the unsubstantiated claim that a live virus is at root cause of Long COVID, as opposed to talking to ME/CFS patients taking experimental antivirals for decades without benefit.
@NIHDirector
@RobertKennedyJr
The only politician I've heard speak that talks about our country's issues proportionately to their importance.
He is correct; the chronic illness epidemic should be the top priority.
Incredible speech, incredible man.
THANK YOU, MR KENNEDY.
@ratraceco
@SenSanders
Sorry, but I can’t call tens of millions of Americans suffering in agony in the dark with zero help “a good start”. Sounds like just a justification to accept inaction. All the conditions can be equally severe and all should be funded together
I'm going to call it for what it is. This bill leaves ME/CFS and other non-infectious illness patients behind. The best they got is they will be "considered" in other Long COVID studies...
If you were suffering in bed for decades, would being CONSIDERED as a patient in a trial
For too long, millions of Americans suffering from long COVID have had their symptoms dismissed or ignored – by the medical community, by the media, and by Congress. Unacceptable.
Congress must act now. Yes. It is time for a Long Covid Moonshot.
@BottsieHicks
Formal studies haven’t been conducted yet, but ME/CFS is systemic. Blood flow is a problem, but as I said I think lymphatics and connective tissue are also affected which will also affect blood flow, nervous system, muscles etc
Imagine if people took the failures of our healthcare system, which kill thousands of people a day, as seriously as they do 5 people stuck on a submarine.
@JanetDafoe
I hope this can be updated to incorporate degree of suffering as well. There are people who can physically run a mile, but they will feel awful. Or maybe they can do it once or twice, but not repeatedly. Many people suffer extremely, but don’t lose functionality as much.
@HarryBoby4
Why I know beyond a shadow of a doubt Long COVID will NOT be solved in 5 years:
You can have the largest excavating equipment in the world, but if you’re on the wrong island, you’ll never find the buried treasure.
Our scientific method is fatally flawed.
@NeurologistMom
because "inflammation of brain and spinal cord" does not accurately describe the illness. there are WAYYYY more systemic factors to this disease than the CNS. I would prefer chronic fatigue syndrome over a step back like that
@NIHDirector
Monica Bertagnolli declined my request to speak with her today due to scheduling conflicts. While understandable that there are time constraints, there are consequences to avoiding patient feedback. Sharing my response with everyone.
Check out the following clip from my recent interview on the Multiple Chemical Sensitivity Podcast, where I talk about particulate exposures causing chronic pain/fatigue! Full video in the link below 🧑🔬
@InflammaSean
True... but I'm talking about what's practically useful. If you put your hand in a fire 10,000 times and every single time it burned you, do you need a clinical study to know that fire is hot? At a certain point, you can be comfortable in knowing something.
@LCMoonshot
@SenSanders
Imagine how much we could accomplish if LC, FM, ME/CFS, MCS, MCAS, POTS, and EDS all started working together for funding for the whole pool of patients, rather than only trying to advance their own diagnosis
It blows my mind that millions of people have ME/CFS and no doctor or researcher has ever said “Hmmm, let’s look in peoples homes and see if we can identify any common factors…”
Isn’t that the first logical thing you think people would check?????
@FStevenChalmers
I worry that we are researching the wrong things and moving in the wrong direction, and those who are chronically ill will never get the help they need in their lifetime