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A skeptic no more, Wes Ely has jumped with both feet into long COVID.
What a heartening story Wes Ely MD, MPH is. He’s precisely the kind of researcher we want studying long COVID (and ultimately, ME/CFS. Given how much he’s talked about ME/CFS, I would be shocked if he didn’t go after ME/CFS at some point).
Ely is not your average researcher. He’s co-authored hundreds of studies, co-leads the “The Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center” at Vanderbilt University, and has continuously been on the receiving end of large federal research grants (NIH/VA) for 20 years.
Deeply embedded in the medical research infrastructure for decades, Ely is the kind of guy we’ve wanted in ME/CFS for decades. He regularly puts on large and expensive studies and clinical trials and is currently working off of $38 million in federal funding, which he told Gez Medinger he expects to soar to $60 million with new long-COVID funding.
As a bonus, Ely has been studying post-intensive care unit syndrome (PICS) – a condition that Dominic has shown looks much like ME/CFS and long COVID.
THE GIST
- What a heartening story Wes Ely MD, MPH is! A former ME/CFS skeptic, he’s co-authored hundreds of studies, co-leads the “The Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center” at Vanderbilt University, and has continuously been on the receiving end of large federal research grants (NIH/VA) for 20 years.
- Right now he’s working off of $38 million in federal grant money. In other words, this guy is “in”, he’s well-respected, and now he’s all over long COVID and frequently refers to ME/CFS. Plus, he’s a darn good writer and speaker. He’s just the kind of guy we want on our side.
- When his brain center started receiving long-COVID patients with massive cognitive problems, he saw the light and recognized that it and ME/CFS were real and serious diseases. He now rues the days when he dismissed ME/CFS as a psychological disorder.
- His work at his Center has found that long-COVID patients “demonstrate profound memory deficits and executive dysfunction — problems finishing daily chores and task lists, meeting schedules, controlling emotions, analyzing data, and processing information. In other words, they have a hard time living life.”
- Ely has snagged an NIH grant to run a large (500-person) study of an immunomodulatory drug called baricitinib used in rheumatoid arthritis. The drug ended up being the first immunomodulator approved to treat COVID-19, but this is the first time that a drug of this type is being trialed in long COVID.
- These are the kinds of studies that big diseases get as a matter of course but are virtually unheard of in the ME/CFS world. They are the types of studies that quickly get a drug out in the patient population.
- The fact that the NIH – outside of the RECOVER Initiative – is funding what is undoubtedly a very expensive clinical trial in long COVID is very good news indeed.
- The fact that the drug comes from a disease not usually associated with long COVID or ME/CFS underscores the fact that not only do we have no idea where an effective drug will come from but that many, many possibilities exist in the repurposed (already in use) drugs.
- Ely is also assessing whether neurocognitive exercises can improve cognition in long COVID. He ends up asking long-COVID and ME/CFS patients not to give up hope and that he is in this for the long run.
- Check out several video interviews with Ely in the blog.
Ely’s immersion in long COVID came out of his intensive care work. In his YouTube interview with Gez Medinger, he related how he’d get COVID-19 patients out of the ICU, get them over post-intensive-care unit syndrome (PICS), only to see them suddenly deteriorate months later. At the same time that was happening, he was getting emails from colleagues reporting the dramatic cognitive problems they were seeing in patients who’d never been in the hospital before. PICS, he concluded, this was not – and jumped with both feet into long COVID.
Ely has gone from a skeptic not just with long COVID but with ME/CFS, long Lyme and fibromyalgia. He readily admits he believed what he was taught in medical school – that these diseases are not real. (He reported some recent medical students are still being taught that long COVID is not real.) Indeed, in media articles, Ely has repeatedly pushed back against the “ivory tower” mentality of the medical profession which disregards diseases it doesn’t understand.
His work validating the cognitive problems found in long COVID (which match those found in ME/CFS) at Vanderbilt University’s Critical Illness, Brain Dysfunction, and Survivorship Center is invaluable given the center’s long track record assessing cognition in post-ICU syndrome.
Ely reported that his long COVID patients:
“demonstrate profound memory deficits and executive dysfunction — problems finishing daily chores and task lists, meeting schedules, controlling emotions, analyzing data, and processing information. In other words, they have a hard time living life.”
These symptoms are similar, he states, to those seen in “mild to moderate Alzheimer’s disease”, post-ICU syndrome, and myalgic encephalomyelitis/chronic fatigue syndrome.
Besides being a compassionate researcher, Ely is a vivid writer as well. In his Stat News piece, “The Haunting Brain Science of Long COVID“, he reported that the “bridges (white matter) linking different territories of the brain have been blown up and the land itself (nerves in the cerebral cortex and hippocampus) become scorched, leaving people with long Covid plagued by thinking and memory deficits.”
Ely compared damaged communication networks in the brains of long-COVID patients to damaged bridges. (Image from Wikimedia Commons)
His Washington Post article, “How long COVID reshapes the brain — and how we might treat it“, reported that the microglia and astrocytes in the brain are “revved up in ways that continue for months – maybe years” in long COVID. He likened them to a “rock weighing down on the accelerator of a car, spinning its engine out of control”, causing injury to many cells.
Ely’s Big REVERSE-Long COVID Study
Ely’s 400-page long-COVID clinical trial grant application (!)
Ely’s REVERSE-Long COVID study may be as important for what it says about long COVID and the medical profession as the study itself. The “multi-site randomized, placebo-controlled, double-blind, parallel-design” baricitinib study – which was unfunded when Gez Medinger talked with Dr. Ely about it – is, by ME/CFS standards, gobsmackingly large. These are the kinds of studies that big diseases get as a matter of course but are virtually unheard of in the ME/CFS world. They are the types of studies that quickly get a drug out in the patient population.
The 5-year 500-person NIH-funded study should begin recruiting patients soon at five universities (Emory University, University of California, San Francisco, University of Minnesota, Vanderbilt University, Yale University) in the U.S. Neither the cost nor the funding Institutes at the NIH were reported, but the cost must be huge. (A 30-day supply of a 1 mg tablet is reportedly around $2,770 and this study will, for the most part, be using 4 mg/day.)
Ely’s interest in baricitinib (Olumiant) dates back to a June 2020 study that used artificial intelligence to tag the JAK1/JAK2 inhibitor as a possible COVID-19 drug. (JAK inhibitors have been used in cancer, inflammatory diseases, and various skin conditions.)
The AI study suggested that baricitinib’s antiviral and cytokine-inhibiting properties could be helpful, and the drug ended up being the first immunomodulator approved to treat COVID-19. This is the first time, though, that a drug of this type is being trialed in long COVID.
The fact that the drug is currently FDA-approved for use in rheumatoid arthritis and severe alopecia areata (bald spots) demonstrates: a) we have no idea where a drug for long COVID, ME/CFS might come from; and b) we have to keep an eye out for artificial intelligence-produced possibilities.
A big trial of a rheumatoid arthritis drug in long COVID underscores the fact that we have no idea where a drug for it, or ME/CFS, or fibromyalgia will come from.
The study will assess cognition, exercise capacity (CPET), functional status, quality of life, post-exertional malaise, symptoms, inflammatory markers, and viral persistence.
Individuals meeting inclusion criteria will be randomized to one of two arms: the intervention arm of baricitinib 4 mg daily for 24 weeks (dose adjusted to 2 mg or 1 mg for baseline renal dysfunction) versus the placebo arm for 24 weeks.
ME/CFS
When asked if he’s checked out the ME/CFS literature, Ely said he’s read “all of it”, and acknowledges that the major long-COVID hypotheses (pathogen persistence, immune activation, dysautonomia, endothelial damage) first came from the ME/CFS community. He states that the medical community has a lot to learn from ME/CFS and that he now has close friends in the ME/CFS community.
We’ll see what baricitinib and other drugs will do, but Ely has also written about the brain’s “immensely powerful ability to remodel itself” and heal. “1,000 trillion synapses” after all, “are constantly being modified every second of every day”. Time will tell whether energy-depleted long-COVID patients can harness this neuroplasticity, but his lab is currently assessing whether computerized cognitive rehabilitation programs can help.
I don’t think Ely or anyone expects these programs to return patients’ cognition to normal, but a 20 or 30% gain could make a big difference. This is the kind of study that could’ve/should’ve been done on the disease (ME/CFS) that coined the term “brain fog” years ago.
Ely’s message to the long-COVID and ME/CFS community is the same – do not give up hope – and know that he and others are in this for the long run.
Conclusion
This is all good news. A former ME/CFS skeptic leading a large research center at a major university embraces both long COVID and ME/CFS, advocates for them in media articles, gets a very large immunomodulator long-COVID study funded, pledges to stay the course for these diseases, and implores patients not to give up. Nice!
Resources
We have another good long COVID resource to add to our list Gez Medinger’s YouTube channel. There’s also the very active Polybio Research Foundation YouTube Channel, the TLC Sessions: the Long COVID Sessions podcast (thanks Gayle!), and Eric Topol’s Ground Truth substack often focuses on long COVID.
PolyBio’s Wes Ely Interview
- Coming up – we’re seeing some heavy-duty immune drugs being trialed in long COVID – something we’ve wanted to see trialed in ME/CFS for ages. Coming up – we check out the long COVID clinical trials that are underway.
Great news! I hope if early results are positive they can quickly add MECFS patients into the study. Sign me up!
I used to despise doctors and those in the medical community who thought ME/CFS was a behavioural disorder. But when I think back prior to myself developing ME/CFS over 34 years ago, I too didn’t believe it was a real physical disease. I remember mocking the TV as people complained about yuppie flu.
So the reality it’s not the fault of those directly taught by the medical establishment. It’s a select group of prominent psychiatrists who lied through their teeth and manipulated their findings in fraudulent studies like the PACE Trial. They are to blame. Some even blocked biological government funding in the UK.
The Lancet too is also to blame for allowing such a junk publication. That study used the discredited Oxford Criteria, meaning people without ME/CFS would have easily slipped into the study. Skewing the results, as much as the researchers also intentionally moved the goalposts themselves.
So it’s partially understandable that many in medicine believed incorrectly. Unfortunately we the patients suffered decades longer than we should have.
Although an astute medical observer should be able to tell the difference between an ME/CFS patient who is full of hopes dreams, desires and aspirations (we have long lists of things we yearn to do) compared to a depressed person who have lost or blunted many of those desires.
So it’s time the medical community make up for their lack of understanding. They owe us big time.
Plus there needs to be an a full investigation into the appalling behaviour of the psychiatrists who hijacked ME/CFS profited from their fraud. Convincing even the brightest of minds the disease wasn’t real. That resulted in disease worsening, deaths, extreme suffering and suicides,
What happened and continues to happen, seriously needs to be exposed as one of the greatest malpractice events in modern history
Very well said. I couldn’t agree more. ✅
I remember when I first heard about multiple chemical sensitivity. I’d had ME/CFS for decades and I thought those people were absolutely nuts. A couple of years later I got a severe case of MCS and still have it – in diminished form – but its still really there – 20 or so years later.
Have also had ME/CFS for decades with, now, severe MCS. My intro to multiple chemical sensitivity was through the ‘Seinfeld’, ‘Bubble Boy’ episode.
I still remember opening my tent one day and being overwhelmed by the plastic smell. (I had never noticed it before.) What a mystery that problem is – although I assume that its just another case of central sensitization.
Or maybe MCS is a MCAS’ish thing?
Yes, I believe it is. I was diagnosed with MCS decades ago – and only recently with MCAS.
I yearn for the day when my brain and energy production would work normally. I sure hope something comes of this drug. It grieves me that my entire working life was stunted and eventually entirely cut short by more than 10 yrs by this insidious illness.
No kidding! I would love to feel healthy again and top of my list is simply being able to do the work I want to do…So many things, so many projects, so many possibilities eft undone because of this!
I encourage you to check out and participate in the Lives Interrupted project to let everyone know the costs of these illnesses – https://www.healthrising.org/bm-welcome/
By the time many of us connect with medical care, we can be both “… an ME/CFS patient who is full of hopes dreams, desires and aspirations (we have long lists of things we yearn to do)” and “a depressed person who have lost or blunted many of those desires” so I’d be hard pressed to differentiate. Then, add in some all-too-common cognitive fog. But I still have _plenty_ of blame and resentment to throw around about this stuff.
OTOH, how about Marco Loggia’s scans and studies? Those were major game changers.
Totally agree, except for this: By the time many of us connect with medical care, we can be both “… an ME/CFS patient who is full of hopes dreams, desires and aspirations (we have long lists of things we yearn to do)” AND “a depressed person who have lost or blunted many of those desires” so I’d be hard pressed to differentiate. Then, add in some all-too-common cognitive fog. But I still have _plenty_ of blame and resentment to throw around about this stuff.
OTOH, how about Marco Loggia’s scans and studies? Those were major game changers.
B Rob, I wholeheartedly agree with all the points you raise. I caught M.E. pretty-much at the same time as you did, and faced the same distain from the medical profession.
Perhaps we should get ITV to make a documentary series; it worked for the Post office victims. 😉
I whole heartedly agree
This is great news! I think the other podcast you are thinking of is TLC Sessions: Living with Long COVID. Noreen Jameel and Emily Kate Stephens, both of whom have Long COVID, interview a variety of experts from around the world.
That’s it! Thanks 🙂
Thanks for these good news.
The podcast by the two journalists with Long Covid from the UK is “Long Covid Sessions”.
I second your recommendation, Cort!
Oops. Sorry. I just saw, someone already mentioned this above.
How does a person apply to be part of the barcitinib trial?
Gez Medinger‘s YouTube Chanel is a fantastic bunch of videos that he created during his journey with Long Covid. He interviewed some really interesting people including some prominent ME/CFS researchers (although not enough)
A couple of the Long Covid researchers were reinventing the wheel because they failed to read the existing ME/CFS literature. However that said it’s still good to have fresh eyes on the subject. Because many other guests also have new ideas and hypotheses.
So well worth watching the ‘Gez Medinger’ channel, (just type in his name) the videos aren’t too long either. Plus Gez himself is an intelligent likeable guy with brilliant ideas and he puts his education at Oxford into use creating graphs and polls.
You also see I’m in varying states of health. As he’s been affected quite badly by Long Covid
He also co wrote ‘The Long Covid Handbook’ with immunologist Danny Altman
Thanks Cort for some much needed positive news. Let’s just hope that ME/CFS (ie other viral instigated diseases such as Chronic Epstein Barr) don’t get ignored and bypassed. We have been suffering for many decades longer than the Long Covid community.
Wayne, I agree with you. Here is some testimony from yesterday in Congress:
https://twitter.com/luckytran/status/1748037164913267006
Best of luck to Dr. Ely. I remember seeing his videos, first touting Baricitinib as the treatment for COVID19 after AI picked it, and then JAK inhibitor for long COVID. There are plenty of MECFS patients who have been treated with RA drugs though, and I don’t see how this would be much different. MECFS patients routinely fail on CRP test for inflammation or RA. Immune modulators are not going to help if MECFS is inflammation-hypersensitivity rather than inflammation or auto-immune disease.
Our resident skeptic! 🙂 Your comment prompted me to look up drugs for RA. There are 3 classes of drugs (besides NSAIDS and steroids) and 11 drugs are listed and others are present. I didn’t know that many people with ME/CFS have tried RA drugs (and failed) but since there are quite a few of them maybe there’s room for more testing.
ME/CFS is not RA but if some of the same cytokines are involved (Klimas is testing etanercept) maybe some people will see some progress. (Ely notes that several kinds of long COVID probably exist.)
Here’s to a good result for some patients 🙂
Glad to be at your service, man:)
I dunno what he meant by different kinds of long COVID, but he better not resort to MECFS subtypes to justify statistically inconsistent/insignificant outcome. Subtypes are a belief, not science, at least till somebody proves otherwise.
YES!!!
Long Covid and ME/CFS are definitely all in the brain!
More of this kind of research, less on futile viral research, please.
Speaking of the brain, hopefully Younger’s results are out soon???
May I ask what results you are talking about?
I understand Jarred Younger was doing a decent study looking at neuroinflammation in ME / CFS. I think Cort had previously said the results of the study were expected late 2023.
When I talked to him in the spring or summer I think it was he had gotten all the approvals for the study and was about to start testing patients. I don’t think we’ll get a study for awhile but I had the feeling we were going to hear some results.
I can understand a neurological connection with brain fog or memory loss. (I imagine a bad gut microbiome affecting the brain as a potential connection.) Or something else causing lesions on the brain.
But when it comes to retraining the brain, I can’t understand how that would help? Like, of course we can begin to create alternate pathways for cognition and memory. But that doesn’t fix the cause, so those pathways will probably be affected too.
And then there’s the whole fatigue issue. Even if my brain could be trained to think more clearly, I wouldn’t have enough energy, cognitive or otherwise, to make use of that.
But hopefully this trial will be ultimately helpful to a nice subset of people who are not as severely affected.
I would be shocked if it took away all brain fog but if it could produce moderate improvements that would be great. The studies suggest that our brains are focusing on unnecessary stuff – background noises, lights, whatever – things that most people’s brains naturally filter out.
That means our brains are using more energy to accomplish the same tasks. If we could find a way to get them to focus more and operate more efficiently that could at least be helpful. I have no idea if cognitive retraining could manage that.
The low energy problem is the big one, though.
I’ve read that a fatigued brain i e brain fog might actually be described as a light ball lit in fog. The light disperses and normally accurate signals get weak and diffuse. Maybe there is ways to “think” in a different way to make it more effortless to bring the message through? Like boats using sound or radar to find their way through the fog? And by finding those different ways of connections use less, cause less PEM? That to cause less damage …? Could that type of “retraining” help?
Retraining the brain programmes when used for ME, Exhaution disorder etc target the autonomic nerv system if I have understood correctly. There is also other retraining the brain methods targeting pain in amputees, or recover mobility after stroke or other similar brain damage. It is a very wide concept indeed.
You also have a debate whether “cross word solving” delays Althseimers or if it just makes you better at just solving cross words and similar tasks …
We do not know yet … research under progress I guess. Just some thought that came to my mind reading your comment.
Wow! What an incredible and inspiring video featuring Dr. Wes Ely being interviewed by Amy Proal. Such a dynamic duo. So glad there are people on our planet like them. Thanks for posting it, Cort.
Really glad to hear that! I just saw that video at the last minute and popped it into the blog and haven’t seen it. Amy Proal really gets around 🙂
The Ely articles on long covid and the brain are behind paywalls. Can anyone access them and summarise his key thoughts on what’s happening in the brain?
Am I wrong to be looking at this as a skeptic? Because there is so much nice research money around?
I’d feel a whole heck of a lot better if there were ABJECT apologies from those who have disbelieved patients for decades. Real apologies. Promises never to do that again, and to advocate for patients with other doctors.
Sick vulnerable people should not have to persuade doctors that they’re not LYING and GOLDBRICKING and LAZY.
Maybe it’s just me after almost 3.5 decades.
You are absolutely right. That’s also what I thought when I read Cort’s blog. With a fund of 60 million, many doctors will see the light. That being said. I wouldn’t put my money on a drug for rheumatoid arthritis.
Rheumatoid arthritis runs in my family and I know this type of medication and the side effects. The effectiveness is also often disappointing. It never actually cures the disease. But makes it more bearable. But that often comes with a price. For example, it is very bad for your liver and immunesystem.
There is a risk that they will ASSUME there is now a ‘solution’ and move on – leaving us with something that is way sub-optimal.
And no cure.
And a huge cost, way too much for many.
It’s great to see a prominent researcher to join the cause. The trial, though, has issues. Meds are $11,000 per day for a possible 20-30% increase in cognitive function. Even if it worked, who could ever afford it?
This almost made me cry so many times during the doctor’s talk. HE is sooooooo right about the listening and the family element. I wish I could reach out to him after so many dismissals by doctors regarding the MECFS and then the 16 months of long covid. I study biochemistry constantly but any information I try to share with my doctors gets immediately dismissed. WE here on the west coast in Oregon have so little research going on with doctors with open minds. We need to hear you here. Many, many blessings to you.
Wonder what made him turn around, a 60mln fund? Long Covid is a nice business model, isn’t it? For the time being, he only examines Long Covid patients and not ME/CFS. His research into Long Covid will last at least 5 years. Suppose he then starts researching ME/CFS, then we will be 10 years further. Anyway, glad this man has finally seen the light.
you say italways so correct 🙂
This all sounds very exciting, but how do we get researchers to stop including CPET tests in long covid studies and trials? I’d love to participate but fear the risk is much too great for me.
CPET tests are very valuable and I think we will continue to see them. You should know that while CPET tests seem a wall to high to climb that the Workwell Foundation has been conducting 2-day CPET exercise tests for disability in ME/CFS for decades and has followed the people who have taken them and hasn’t found problems with recovery. These tests – while exhausting – generally only last 7 or 8 minutes.
If I’m remembering correctly, a CPET is the equivalent of carrying 1 box of groceries up 1 flight of stairs.
This degree of exertion may well be too much for some, but not all, ME patients. But this comparison puts the exertion into context.
(And, as Cort says, the “2-day CPET” means the test lasts about 8 minutes on 2 consecutive days – to measure PEM, if it’s there — i.e. the measurements are compared between the 2 tests – anything greater than an accepted 7% variation indicates a problem.)
Also, my understanding of clinical/research studies is that potential participants must complete a questionnaire and their participation must be approved by a doctor. So, some would-be participants may be unable to be participants if they score below a certain threshold (for their safety).
What are the risks of taking Olumiant?
Manufacturer’s WARNINGS – Olumiant (Baricitinib) may cause serious side effects, including: Serious infections, including tuberculosis (TB), shingles, and others caused by bacteria, fungi, or viruses. Some people have died from these infections. Olumiant can make you more likely to get infections or make any infections that you have worse.
Rheumatoid arthritis and alopecia are autoimmune diseases. I have not seen good evidence that Long Covid is an autoimmune disease. Would you risk the side effects above to take this extremely expensive drug?
I’ve never been impressed with any med that actually suppresses the immune system and this is what Baricitinib does…reduces immune activity. There’s no way I would ever consider taking an immune suppresser. That’s asking for trouble in my opinion.
Does Dr. Ely also focus on exertion intolerance: which results in PEM. For ME pts this is the most horrific state to slide into. Thank you
I haven’t read his protocol in detail but if the CPET is the 2-day variety, then this measures PEM.
How refreshing to see a medical professional openly admit they have changed their stance on a particular issue – a sign of healthy self-esteem and hope for many of us historically told it was all ‘in our heads’.
I tried Baricitinib for a few months. It worked pretty well. I had less PEM and brain fog. From everything I tried(and that’s a lot), it was the best working and pretty fast results.
Unfortunally, I had to stop because I had infections all the time.
But what actual hope does this offer? A medication that costs $2,700.00 for a 30 day supply of a mere 1 gram? When what will be studied is a 4 gram dose: close to $10,000/per 30 day supply? Whose insurance company would pay that?! So seems to me it’s study that might provide treatment for those with $120,000/year solely for one medication. Yes, no doubt something will be learned. But this is not a step forward those without considerable money. I wish researchers would bear in mind that ME/cfs drives people into lower income brackets.
What an amazing and encouraging interview. Thank you so much, Cort, for including this. Dr. Ely radiates hope which we so desperately need these days.
My own research now points to parasites being the cause of ME/CFS, specifically ones that affect the liver, this is explained in the old book “The Cure For All Diseases” by Hulda Clark, this book was published in 1995.
Once the livers function is crippled by the pathogens the toxins start to backup and if parasites also breach the BBB ( which I confirmed last year by taking GABA several times ), those toxins are going to affect the brain, which she says is enhanced by the presence of some petrochemical related toxins.
I tried to kill the sheep liver fluke parasite using the Clark Zapper function of my frequency generator machine and some more specific programs, its technical name is Fasciola Hepatica. My liver did start to hurt a little after this which was never the case with any of the other frequency treatment / detox programs, and even the next morning it seemed to still hurt. She says to also perform a liver cleanse after the parasites are dead. It will take me a while to verify this information I just have a feeling that it is correct.
Wes says on the one hand that the likely cause of long civid is chronically overactive microglia (agree), but then on the other hand is trialling a drug that doesn’t seem to specifically target microglia. Can someone please enlighten me on the connection?
I was (with us, a huge portion of our lives “were” this or “was” that), a graduate teaching assistant and research assistant at a major university, had finished my master’s degree, and was taking doctoral courses, when I got very, very ill. That dreaded drop dead flu type prolonged illness. There was nothing that didn’t hurt, nothing worked right, I managed to get back to teaching but lost my voice and could barely get back to my office after teaching. I would immediately turn out the light and collapse on the floor until I had to get up and try to keep working/teaching. I had no medical insurance and no paid sick leave. My professors, students, coworkers and the department head were all worried about me & wanted me to go to the doctor& at times, the ER, when I would come close to fainting because of the dreaded bp drops we get. But without insurance, getting medical care is a whole’nut her huge matter.
I never recovered, of course, and never got a chance to work in a field I was SO excited to work in. I missed teaching undergrads and still do, though it’s been over 30 years. I didn’t qualify for disability because of my job& student status and judges then simply refused to acknowledge that ME/CFS was disabling.
We lose so much to this disease it’s hard for others to comprehend. And having to deal with a medical system that often still doubts us, still tells us we need to exercise, don’t stay in bed, try harder, etc. Even when doctors know I LOVED hiking, running, swimming, working out with weights, loved my job and my life…so apparently I just randomly decided to be sick and stay in bed. Right. Check. That.
Sorry for the rant. I’ve been having a rougher than usual patch and have to find a new doctor. 🤦♀️ We know how fun that is, especially when just getting showered and dressed is next to impossible to do on the same day you see the doctor.
Thank for listening. 😍
Thanks for telling your wrenching story Carla – it sounds all to similar. I invite you and everyone to put your story on Lives Interrupted – and let people know in full the amazing, really, costs of these illness.
https://www.healthrising.org/bm-li-view-stories/
Good luck with finding a new doctor. I can only think that things are going to get better and better over time in that regard and Health Rising will soon have a way to find them. Stay tuned!