Haylie Pomroy – the Assistant Director of Integrative Medicine Institute for Neuro-Immune Medicine at NovaSoutheastern University – talked with Dr. Klimas and me about chronic fatigue syndrome (ME/CFS), fibromyalgia, and long COVID.
It was a general discussion touching on the early days of ME/CFS, its unique beginnings, Dr. Klimas’s first ME/CFS patient, the emergence of long COVID, the impact of the ME/CFS field on long COVID and vice versa, the continuing funding woes of ME/CFS, the RECOVER long-COVID project, the need for integrative doctors, and the ignorance still pervading doctors regarding ME/CFS.
One personal note: I am still learning how to do video interviews. It seems I’m either too close to the camera or too far. In this video, even though I’m 6′ 6″, I look, with my head poking just above the bottom of the screen, like I’m 4 feet tall. I’m learning and I will get this down.
- Apple Podcasts: https://podcasts.apple.com/us/
podcast/hope-and-help-for- fatigue-chronic-illness/ id1724900423?i=1000665993042
- Spotify: https://open.spotify.com/
episode/ 4ro8hRknue92IyE5nytoYT?si= 796b94ae7e9445db
What’s Up Doc? – A “What’s Up, Doc?” episode with Dr. Klimas talking about what’s exciting her in the ME/CFS/FM and long COVID field is coming up.
Ziyad Al-Aly Webinar – Dr. Klimas will be talking with Dr. Ziyad Al-Aly on “Long COVID – an Emerging Global Health Crisis – on Aug. 27th. Ziyad Al-Aly is the dynamic Veterans Administration researcher who has perhaps done more than anyone else to uncover the devastating impact long COVID has made. He has forcefully advocated for ME/CFS before Congress as well.
- Register for the webinar here.
Institute for Neuro-Immune Medicine (INIM) Videos
INIM has produced many videos over the past 2 years including:
- Integrative Approaches to Brain Health
- Individualized Treatment for ME/CFS with David Systrom
- Brain Fog – Causes and Prevention
- Exercise Physiology for Chronic Illness
- How Post-Viral Illnesses Cause Postexertional Malaise
Haylie Pomroy
Haylie Pomroy, the lead of INIM’s podcast series, is the Assistant Director of Integrative Medicine at the Dr. Kiran C. Patel College of Osteopathic Medicine and The Institute for Neuro-Immune Medicine at Nova Southeastern University. An author, wellness consultant, and leader of the Pomroy Group, her autoimmune diagnosis propelled her into the integrative medicine field. Learn more about her metabolic programs and her work here.
So what is the treatment?
My wife has long Covid.
Joe j
Hi Joe. Good for you helping your wife. As you know long COVID and ME/CFS are very difficult conditions to have and to support.
Unfortunately is no simple answer to that question – there are many possible treatments and no guarantees for any of them. Different people have responded to everything from guanfacine to nicotinic patches to stimulants to orthostatic intolerance treatments to antivirals to mitochondria enhancers to dietary changes to neuroplasticity practices and more possibilities are showing up regularly.
Some large clinical trials are underway.
You can run long covid and treatment through the search engine on Health Rising to check out some of the many possibilities.
The best thing is to see an ME/CFS/Long COVID specialist if you can find one. Health Rising will soon have a map and review site which should help.
Good luck to you and your wife.
Thank you
Might want to check out Dr. Jacob Teitelbaum’s newest book on How To Recover from Long COVID, it’s sorta a summary of “From Fatigued to Fantastic” 4th Ed… anothere excellent resource book wise.
Hi Joe – heres another idea: check out this resource page from the Bateman Horne Center – and if you can get to Salt Lake City they would be a great place for your wife to go
https://batemanhornecenter.org/outreach/patients/
Dr Klimas, You were on the forefront and recognized right away something wasn’t right. I have seen your name associated with this for decades. I got a bad case of Mono in1969 at age 15- and have never been the same. The last 40 years I have been mostly an invalid/bedbound.
I’m grateful that you are all the light bearers for us now.
You are helping the new people have HOPE. Keep Going!
Thank You! Thank You! Thank you!
I can’t think of anyone who has taken on more jobs and been on more committees and who has overall showed up more than Dr. Klimas. It’s been amazing watching her.
You can start with Dr. Klimas 3 videos about patient care and limited exercise which were made around 2015 and also her video made at a medical convention in 2011 to New Zealand doctors which is much more specific as to dosage. These gave me a systematic approach to putting a program for myself together and how to approach my doctor. Cort has published on this site a review of about 40 treatments…I can’t remember who wrote this…it reviews medications and supplements which are most helpful. MeAction has something like cliff notes which can get you started. There is also a coalition of ME/CFS doctors recommendations (about 20 pages) on diagnosis and treatments. This is a multi-system situation of about 7 systems of our body which all need addressing so you will not find a one pill answer. If I was able to go back, I would early on get a 2 day CPET test which would help me to figure out how to limit my activity level and confirm that I have postexertional malaise. Joe, there is no treatment…there is only putting together a management program to make her life as good as possible and to stop making life style choices which create more harm. Watching the movie UnRest by Jan Brea to help get a better idea of what this can look like at its worst but most brave is something I recommend to people.
Integrative doctors often don’t take insurance. How to afford them?
Great question!
Not everyone has time for videos. I hope you will give those of us who don’t the option of reading the transcripts. We can get through those pretty quickly and a lot of times we just have time for “the gist” if that’s included.
Cort, do you know anymore from Nancy about the monoclonal antibodies trial for long covid. You previously published a blog where three people recovered fully in less than a week. I watched this YouTube lecture and at 6 and a half minutes in Nancy claims to know of 17 more recoveries. Any behind the scenes info? https://youtu.be/8KSVeiOKYSg?si=XlAnIQWtV1NKdEdZ
Hi Tom, Thank goodness you put the link to the YouTube video by Dr.Klimas. At the very end of the video she warns that zylitol has recently been linked to blood clotting, a problem in ME/CFS. I had been taking little zylitol tablets throughout the day to mitigate dry mouth. I have ME/CFS and heart problems linked to Covid last August. Your message may have just saved my life.
What an amazing thing that was! In April she said that she hoped to start a 20-person trial by May. She said pharmaceutical companies were eagerly awaiting the result of the 20-person trial.
https://www.healthrising.org/blog/2024/04/26/klimas-chronic-fatigue-long-covid-gulf-war-illness/
The thing was that that antibody only worked for people with earlier versions of the virus. I think it may be Heinrich at UCSF or somebody else there who is trialing a newer monoclonal antibody in long COVID.
Thank you Cort and professor Klimas for your efforts and tenacity. I have been ill for almost 30 years and realized that time has passed so quickly and so much energy has been wasted on recognition. Finally that one is starting to happen. Although there is still a long way to go. Imagine if we as patients were treated normally by doctors and institutions, what that means for our health. That would make a very big difference.
Oh my god. I’m sure there are downfalls to AI but the sheer ignorance that so many doctors have had over the decades makes me hope that it gets instituted as soon as possible.
It took me over a year to tell my primary care doctor that I have ME/CFS/FM. I said “I haven’t been telling you everything!” I wanted to establish a relationship first. Luckily, he was great. 🙂
This was a great interview, yet I do feel a bit discouraged and don’t know exactly why. I was told I was depressed and an attention seeker by several doctors at a large, well known and well respected clinic in La Jolla Calif, until one rheumatologist at the same clinic felt the golf-sized swollen gland in my neck and told me that depression causes many symptoms, but not swollen glands. He believed what he saw. He told me science was not sophisticated enough to know what was wrong with me. That was back in 1978. And that simple statement carried me through decades of being mistreated, ignored, and thrown into the wastebasket by countless doctors since then, but I knew they were wrong and so I kept on and was fortunate enough to see Dr Komaroff in Boston for a week of intense testing. And to see him several more times. Although distance kept me from being a regular patient of his. Thank you to all the doctors who have advocated for CFS, for believing what they saw and heard from their patients. And always , Cort, thank you for your ability to jell the research down to layman’s terms. You are a true light for us. You do the hard work.
Jeanie was Dr. Komaroff able to find a treatment that helped you?
No. Too early on.
I got this “science was not sophisticated enough to know what was wrong with me.” a couple of times in the 80’s and 90’s. It was much better than you just need to work harder.
Cort, what resonated with me was your comment in the interview that although researchers are now believing that CFS is a real disease, the doctors patients regularly see, still seem to put up a wall when we mention we have CFS. I still don’t tell them as I expect to see that “look”they have when I try to explain how long and how very sick I’ve been. The continual dismissal is just more than I can take. I hope one of these days to see the doctor in Flagstaff that treats these diseases, but will have to wait until finances improve🥴
The doctors always seem to be the last ones to get it unfortunately. I’m curious if all the long COVID clinics associated with the RECOVER project will help to change things for ME/CFS. Since they are in touch with long COVID patients daily they have a really good idea what ME/CFS is like – but whether that will somehow bleed over into ME/CFS or how it would do that I don’t know. Still that’s a lot of doctors who are learning about these diseases.
We could really use a diagnostic test or a big effective treatment study that perks open the ears of doctors.
Wait, Flagstaff!? Who in Flagstaff treats this? I’m so sick of trying doctors in the Valley. (Sorry, not meaning to be rude — just boggled.)
Dr. Theresa Dowell
928-773-9714
Four Peaks Health Care Associates
Thank you so much! 💛
Jeanie, My sincere condolences on your illness. My partner and I have also had CFS a very long time (1973 and 1987). What I often do with new doctors (there always seems to come a point when a doctor is not interested in having you as a patient, as nothing ever seems to get better), is to say “I have chronic fatigue syndrome, but I’m not expecting you to cure me. I have realistic expectations and I know there is no treatment for it. But sometimes certain medications can help with symptoms like constant flus and infections.” I think that makes some of them feel better, but I feel most are put off when I ask for things I’ve researched/want to try… Or try to explain you need to try a much lower dose of a medication than “normal” people do, to begin with due to an overly sensitive system. It’s definitely a strategic deal, going to the doc when you need a prescription med!
Thank you for this very nice reply. I appreciate your good suggestions
You’re very welcome, and I wish you the best (and for all of us sufferers of this illness).
That was awesome ! Thank you Cort and Dr.Klimas !!!
Also , it was nice to hear/ recognize that besides post viral illness, toxicants lead to the same outcome …. As is the case with me !
Fascinating that both Cort and Dr Klimas mention Incline Village.
Both fully aware that if anyone ever does come back to ask what happened here that it is all going to come out that not a single doctor or researcher ever looked into the origin of the Holmes 1988 CFS syndrome.
I anticipate that, as always, my post will be moderated and blocked.
Just as all “ME/CFS advocates” have always done.
-Erik Johnson.
Incline Village survivor, prototype for CFS.
If you will remember, the only time your posts have been moderated was when you denigrated the work of others. So long as you don’t go after others in the field your posts are fine. 🙂
I ALWAYS denigrate the work of others.
Every post I make is an assertion that “No doctors or researchers ever responded to the first clue in the CFS syndrome”
Which is automatic implication of incompetence, malfeasance or perhaps worse.
That their behavior is conscious and deliberate.
As Dr Ritchie Shoemaker told me, “Your very existence is a reproach to them. They are going to make you disappear”
Which is exactly what they did.
This is an example of why Erik’s posts are being moderated – because Erik is always right and everyone else is wrong and they’re not just wrong but incompetent and even exhibit conscious and deliberate malfeasance. That’s crossing the line Erik!
Only Erik is making Erik disappear. All Erik has to do is state what he believes without trashing virtually everyone else. Unfortunately, Erik is apparently more interested in trashing others than get his ideas across.
Science is very clear on this.
The incident and evidence that baffled, Cheney-Peterson and CDC epidemiologists Kaplan and Holmes has never been investigated.
(Rest of comment moderated: conspiracy mongering and denigrating researchers not allowed).
I have been following you from Catalonia for some time. I am in a patient association, ACSFCEM and find everything you do very interesting. We share a lot of research and also your articles to associated people. I also think that if you could make a short summary of the videos, of the main ideas, it would help us very well since many times it is difficult for us to keep our attention for so long and reading is more adaptive. We also follow you from many different countries and it costs even more when it is not the native language that you are listening to. But thank you very much for the work and thank you to Nancy Klimas who has contributed so much to the ME/CFS.
I will definitely make time to listen. Thanks for all you do to keep us informed.
Thank you for a great interview. I became ill with ME/CFS in 1986, but did not find Dr. Klimas until 1992 so spent those first six years very ill and in total chaos. The only source of information available to us for a long period of time was what was then called the CFIDS Assn. of America and Cort’s blog, Phoenix Rising, where we were finally able to get reliable information that we shared with anyone else we knew with this illness. I am so grateful to you, Cort, and to Dr. Klimas for paving the way for us and never letting us give up hope. Thank you for your dedication and perseverance. You both continue to make a difference and I remain forever grateful.
Cort, I know how much work and advocacy you do for us via your website (even though you’re sick, too), but I had no idea how big a part you played in working with the medical community early on and spurring them into action. And always so thoroughly, cheerfully, positively, patiently, and professionally. It’s been a long journey for so many of us; we truly owe you a debt of gratitude for all you’ve done for the community.
Dr. Nancy Klimas was my original ME doctor nearly 20 years ago. She is a treasure. She’s one of the smartest and most innovative doctors I’ve ever met. That plus she HEARS her patients: what a treasure.
I wish I could have gone to her
Keep it simple and remember that all of the chatter and talking over, talking too fast kills any chance of grasping it.
Please stop waving your hands. You clearly don’t understand. You talk too fast and wave your hands and it brings me to tears. I just need to listen to Dr Klimas and No More Podcasts. Do you understand that we are very ull?!!! I’m signing off in tears and disappointed once again.