A major ME/CFS moment just occurred! One of the premier health care institutions in the U.S. just embraced ME/CFS. Others will surely follow.
Health Rising started charting “ME/CFS moments” when they started popping up with some regularity. ME/CFS moments refer to events that seem to indicate that things are changing for the better for this complex and often neglected disease (as well as its allies). The ME/CFS moments we’ve charted thus far include:
- Metrodora – the emergence of Metrodora – a new medical and research center focused entirely on neuroimmune axis disorders such as chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, postural orthostatic tachycardia syndrome (POTS), and migraine.
- STAT Earpiece – designed specifically for diseases like ME/CFS, POTS, and other forms of orthostatic intolerance, this earpiece assesses blood flows to the head.
- Ron Davis’s Big Grant – Ron Davis’s decades-long run of huge grant wins abruptly ended when he tried to get them for ME/CFS. After many years of trying, he finally snagged a big one, bringing up the question of whether ME/CFS is received better where it really counts – at grant review committee level?
- An ME/CFS Clinic and Researcher Get Really Busy – Last year, Bateman Horne Center and Dr. Benjamin Natelson were swamped with work – a good sign!
- Major Fibromyalgia Study Underway – Fibromyalgia is another disease that gets really poor funding. It was really good news then to see perhaps the biggest major finding in FM over the past five years – that antibodies in the blood may be causing it – got a major funding opportunity.
The Mayo Clinic’s ME/CFS Moment
Who would have thought? Anyone who thinks a leopard can’t change its spots or that major progress can’t occur really quickly in ME/CFS, chew on this: the single most maligned healthcare provider in the ME/CFS world has had a come-to-Jesus moment.
The Mayo Clinic breakthrough may be the biggest ME/CFS moment thus far. Mayo has had a special place in the ME/CFS community’s circle of hell for one reason – it promised so much and delivered so little. The Mayo Clinic’s reputation – that it’s the place to go in the U.S. for complex, hard-to-understand diseases – left many people with ME/CFS undertaking long, exhausting, and expensive journeys to get help – only to be given the cold shoulder.
Mayo has a big footprint. It employs over 7,300 physicians and scientists and 66,000 administrative staff, is home to the top-15 ranked Mayo Clinic Alix School of Medicine, and produces many of the highest-regarded residency education programs in the United States.
Mayo’s transformation from an irresponsible to responsible ME/CFS provider appears to have begun about 3 years ago when it dropped CBT/GET from its website. Things really got moving in May of last year when Mayo Clinic’s campus in Rochester, Minnesota met with #MEAction to discuss treatment, research, and improved community engagement for people with ME. Next, #MEAction teamed up with Mayo to win a grant from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS.
In April of this year, #MEAction and Mayo created a diagnostic and treatment algorithm that doctors at the Mayo Clinic campuses will use to quickly get them up to speed on ME/CFS.
Just last week, #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, collaborated with Mayo Clinic doctors to publish a concise guide, “Diagnosis and Management of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome“, and continuing medical education course, to help doctors better understand and manage ME/CFS. #MEAction reported that interest has been strong. The paper was in the top 1% most shared of all Mayo Clinic publications and was the most-shared paper amongst its contemporaries at Mayo Clinic Proceedings.
Check out Jaime and Dr. Grach talking about the effort.
This is a big moment. Doctors across the world look to the Mayo Clinic for answers. Mayo might not have the answer for people with ME/CFS, but it should finally be able to at least manage them appropriately.
Mayo didn’t pull any punches regarding ME/CFS. Its hard-hitting intro:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection” that “is common and debilitating” which produces a “lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure”
will surely open eyes and ears. Its post-exertional malaise (PEM) information nails both the breadth and depth of the most significant problem in ME/CFS. It’s hard to imagine anyone with an ounce of empathy not looking at it and cringing.
Internists who learn that “90% of people with ME/CFS are not been diagnosed” will surely begin to wonder who they missed. It was good to see hypermobility, POTS, and mast cell activation syndrome (MCAS) listed as comorbid disorders (but surprising not to see fibromyalgia, irritable bowel syndrome, or migraine included in the “commonly diagnosed” comorbid disorders section). (Fibromyalgia medications are included in the treatment section).
When we look back at see how ME/CFS came to be recognized as a real and serious disorder that every medical professional should know about, Mayo’s come-to-Jesus effort with ME/CFS might end up being a turning point. Congrats to Jaime Seltzer and MEAction for getting this done.
Have you been to Mayo recently? If so, tell us how it went.
Paliar los síntomas con medicamentos no es una cura. La mayoría tenemos intolerancias farmacológicas y alimenticias. Si no encontráis el origen, no sirve de nada tratar por ejemplo un dolor de cabeza o una gastritis cronica que no se sabe de donde viene. No se cura con los fármacos habituales.
Estamos igual, sin solución .
“Treating symptoms with medication is not a cure. Most of us have pharmacological and food intolerances. If you can’t find the source, it’s useless to treat, for example, a headache or chronic gastritis that you don’t know where it comes from. It is not cured with the usual drugs. We are the same, without a solution.”
Completamente de acuerdo. Muchos no se dan cuenta de esto.
“Completely agree. Many do not realize this.”
Yes, it is true – we don’t have a solution! Mayo is not suddenly going to start curing people. There are a set of treatments, though, that doctors do use to help people – maybe not everybody but many people – and Mayo now has access to some of those – and should be treating patients with respect and dignity.
I looked to your Mayo ‘management considerations for ME/CFS based on symptoms’ – and I’m either already doing them, or I can’t tolerate the medications.
Nothing new. Bummer.
Good for new people, new doctors, a bit of recognition, but not a thing I can take to my doctor to request a trial of based on NEW information. And, of course, no CURE.
Waiting for the NEW Long Covid research to produce something NEW I can USE.
All these things are doing (and I agree, they’re great – compared to what, say, Mayo did before) is loading up the platforms at the station with more and more people, when what we need is new trains to get them out of there.
And all the things I CAN do, pacing, rest, ldn, managing environment, making life as small as possible, etc., haven’t dragged me from ‘moderate=life is hell every day’ to anything better in almost 34 years.
C’mon, researchers: there’s a Nobel Prize in Medicine or Chemistry or something waiting for the one who finds the Holy Grail.
So much energy spent reinventing the wheel, and we STILL don’t have aircars!
Congratulations, Mayo, for joining the 21st Century.
Keep the pressure on, Cort. Thanks for the trip down memory lane. Please excuse the frustration. It’s NOT your fault that a lot of money keeps getting spent without results. Thanks for the summary.
I whole heartedly agree with Alicia.
Throwing varied medications, which usually doesn’t work and may add complications and is not the answer.
We need to treat the core reason/s and not the symptoms.
Many long term sufferers of ME/CFS, have implemented their own regimes and strategies so that we are able to function on some level.
And yes my life is very small……
Many people wouldn’t call it a life being isolated, restricted and in most circumstances just existing.
30 years……of a life less lived.
Finally, our voices have been heard and the world is paying attention and we may have real life solutions.
And for all those out there, especially
those Doctor’s, who dimissed us as though we were not relevant (some thinking it’s a mental illness or we are lying) and now recognising that ME/CFS is real…….SHAME ON YOU
And a thank you 🙏 to those that are determined to find answers and a cure.
Thank you Alicia for saying so well what I also feel. I’m only 11 years in. It’s hard to imagine another couple of decades of this. You are a trooper. Hang in there!
Well, as our condition is poorly accepted these guidelines actually make a great difference.
I can speak for EDS and I really notice the differerence in GP’s knowledge following the new 2017 criteria and all work EDS Society done to educate the medical community. It is a HUGE difference!
Also, in my own case on ME, I wouldn’t have been referred to an diagnosing clinic without the ongoing a?knowledgeing (darn spelling!) of ME by more and more well known clinics/institutions/governing agencies etc (sorry having problem to translate terminology between different systems in Sweden vs the US etc). I didn’t myself look around for the ME diagnose, I was only frustrated that my “burnout” didn’t heal! My doctor was the one wondering and wanted to refer me!!!
These announcements make huge difference – and the treatments suggested are still controversial among medical community! Maybe this will help all of us to at least some relief if not cure! And less fight with providers! 🥰
I hear your frustration, yes, I do!
Thanks Alicia. I feel the same sense of dismay about piling on medications. They just cause more issues for me. However I seem to do ok on LDN.
Agreed. However, mentioning anti-inflammatory diets is a start – a small step in the right direction.
In a video on inflammation in the brain, Dr Jared younger said we don’t know the causes of inflammation.
Talk to any functional medicine doctor, and they will tell you that 2 primary causes our diet and stress.
Mainstream medicine is a long way off from taking an integrated approach to disease and health
TOTALLY AGREE
Good to see this happening, finally. I am 63 and can say I have been through all the testing, all the medications and none worked for me. I do not want to be “drugged” or feel drugged, so none of the meds worked. Klonopin worked for a short time at a very low dose, .125. What has been a life saver for me is Curcumin and Fucoidan. Have tried cbd oil. I take alot of Magnesium, and other supplements. I hope Mayo considers alternative methods.
That would be the next step wouldn’t it? If Mayo really is what it holds itself out to be – the place where people who can’t get help elsewhere go to get help – it has to recognize that these things can help.
I remember when HIV was insurmountable! Now there are effective drugs saving millions of lives.
Covid-19! Vaccines created at warp speed.
Can’t that happen here with ME??? I just came down with it and am in shock about it. I can’t do anything! I didn’t even have a viral event. I can’t find any doctors that want to get involved even with a Mayo matrix for physician treatment. I don’t have thousands of dollars to go to Mayo Clinic and end up with a copy of the matrix.
I am beside myself.
Praying for something!
Hang in there Christine – the first part is the hardest in my experience – and keep with the research! No better time to get this than now.
What brand of CBD oil? And how did it help you?
Here is their website in Colorado.
https://grandvalleyhempinfusions.com
I use it sparingly. You should look into Fucoidan supplement.
It is awesome. Curcumin too.
I have considered scheduling with the Mayo Clinic for years but kept delaying because of the negative feedback. This is good news!!
ME Action kicks ass!
Thank you so much for covering this important development, Cort! Really heartened to see this. Dr. Grach, who also trained at Bateman Horne and is one the Mayo Clinic co-authors for this paper, is truly a rockstar.
One fix though – Jaime Seltzer is the one affiliated with Stanford Medicine, so there were no “Stanford doctors” who collaborated on the paper. Just wanted to let know.
Glad to hear that Dr. Grach trained at the BHC! How about that – a Mayo Clinic doc trained at the BHC – that is so cool. Another example of the BHC making a difference (in ways we don’t know). (Fixed the Stanford issue – thanks!).
Here is a write-up from Dr. Grach on her time at BHC, if interested in viewing:
https://batemanhornecenter.org/mayo-internal-medicine-resident-message/
Dr. Grach was also selected to serve on Minnesota Department of Health’s Guiding Council for Long COVID & associated conditions, a group selected to help provide clinician education who care for long COVID patients in primary and specialty care settings across the state in MN.
I have a friend a few years back who went through extensive testing at Mayo (where she worked). When they finally diagnosed her, she was sent home with some chessy documents on me/cfs, pacing etc. NOTHING else was done. She now sits home 3 yrs later completely bedbound and broke. And zero followup.
And the information they have her was largely inaccurate.
So many stories like this. I guess we can say that Mayo doctors now have access to the basics and that Mayo acknowledges that ME/CFS is a real and serious disease – and as such – it should be being treated differently.
To me that means its specialists should be up on the recent developments for ME/CFS (and long COVID and allied diseases), and new treatment possibilities, etc. If Mayo really is the place where people who can’t get well go to get better it should be on the cutting edge of research and treatments for ME/CFS. No more sending people home with a paper on pacing.
Time will tell.
I’ve been a Mayo/Jax patient for 24 years. My pcp, who I was seeing in St Augustine, pretends to know nothing about ME. He is an excellent pcp, and knows about my symptoms, but makes no comment when I see him, usually every six months!I had an appt with him in sept, but had to cancel, because no one from clinic will help with wheel chair assistance from outside. My blood work is ok, but in Sept when I used a walker go inside, I almost collapsed!
I spent $14000 there in January 2022 only to be offered their 3 week fibromyalgia clinic. I obviously refused.
This is really positive. Thanks Cort.
Have you heard about the impressive improvements seen by sufferers who try wearing nicotine patches? The results are staggering and better than LDN in my opinion.
Thanks for everything you do 👍🏼
Thanks for reminding Nick (otine:) :)) (I couldn’t resist). But really thanks for the reminder to check that out. Who would have thought? I love stuff like that that comes out of the blue and potentially changes the way we see things.
I have frequently been asked if I’ve been to the Mayo Clinic so I am pleased to see them getting engaged. But, on the Mayo website, I see only one Dr that specializes in post-covid and MECFS and that individual is in Minnesota. I hope Mayo will add more doctors to both coasts, encourage medical schools to focus on this illness, and wave the flag for more research. Primary Care doctors and even MECFS specialists do not have the time, bandwidth and comprehensive expertise to manage patients and route them through all treatment options. Many of us largely do our own research and manage our own care so I wonder if the treatment algorithm mentioned above should be opened to patients? Also helpful would be guidance on the supplements so many of us take – how do we know if they’re working, what is the maximum number of years you can take them, how to trial off of them, etc. When I meet with my doctors we run out of time just going through the list of supplements I’m currently on.
I guess it is not profitable enough to dedicate Doctors to CFS.
Not to be too cynical, but I wonder if they are looking ahead, and are looking for cover. Perhaps they have recognized that when the reality and extent of long-COVID really hits, the narrative of what they previously did for ME/CFS patients will get out. And when it does they will (and should be) embarrassed.
This is fantastic work by Jamie & Dr Grasch et al from the ROchester Clinic. However, I think you are missing a key point that this is an article with the Mayo Clinic Proceedings Journal, and is not affiliated with the clinics. Each clinic decides its own approach as I understand it, and many pwME are still reporting nightmares. So while this is great news, it does not mean that all of Mayo is changing, which is what your article seems to be implying.
Let’s hope all the other clinics under the Mayo umbrella do change. Mayo says it has 16 hospitals. 53 multispecialty clinics, with major campuses in Rochester, Minnesota; Scottsdale and Phoenix, Arizona; and Jacksonville, Florida. Additionally, the Mayo Clinic Health System has more than 70 locations serving communities in Iowa, Wisconsin and Minnesota.
Thanks for explaining that. Any culture change takes time – that’s for sure – and doctors can be notoriously resistant to change. It certainly sounds like Rochester – one of their three main campuses is on board – they initiated this process – but as you say it’s up to the campuses and ultimately to the individual doctors. Mayo has a lot of catching up to do.
The creation of the AskMayoExpert algorithm for ME/CFS should help, though, because, according to MEAction – which helped them develop it -it’s an “interactive, clickable flow chart” which Mayo campus doctors now use to help them diagnose and treat ME/CFS.
https://www.meaction.net/2023/04/26/mecfs-algorithm-is-live/
With regard to the Proceedings – here’s what Mayo says about them.
“One of the premier online only peer-reviewed clinical journals in general and internal medicine, Mayo Clinic Proceedings is among the most widely read and highly cited scientific publications for physicians…The Proceedings has an impact factor of 8.9, ranking it #20 out of 167 journals in the Medicine, General and Internal category.”
It will take time – and some ME/CFS patients will surely continue to get the cold shoulder from some Mayo docs but the word is getting out. I have heard from some that Mayo actually has been getting better but it would be great to hear from people who went there recently.
The ultimate goal is for Mayo to become a cutting-edge treatment facility for ME/CFS as it is for so many other diseases.
Thanks Cort. This is great news.
Have you heard about the incredible improvements that many ME/CFS sufferers have achieved by wearing nicotine patches?
We’re running a group of 3,000 people that are trialling the patches and the results have been outstanding. The results are better than LDN in my opinion.
Keep up the good work 👏🏼👍🏼
Where can I find out more about this?
Are you on Facebook?
https://linktr.ee/thenicotinetest?utm_source=linktree_profile_share<sid=b79d2c17-2f8a-413f-a3de-4b11165a3d2c
https://m.facebook.com/groups/thenicotinetest
I just went to the Mayo Clinic website and searched for information about ME/CFS and I couldn’t find any updated information. No mention of PEM as a major symptom, let alone the defining symptom. Clinical trials measuring the effect of exercise on ME/CFS are still enrolling. The one mention of PEM I found called it “Post Exercise Malaise”. No mention of comorbidities.
Those of us with doctors still working in the Dark Ages of ME/CFS will have nothing to take to our doctors to convince them that paying to ask a Mayo Clinic expert will be worth their while. Patients having no visibility into what the AskMayoExpert is telling doctors, makes some of us extremely hesitant to get our doctors to check it out. May be a big breakthrough, but not one I trust.
Mayo needs to update its website! I don’t know that AskMayoExpert says but it was put together with MEAction and Dr. Grach – so I think we can assume its good. I put a video on it in the blog if you want to check it out.
The info that Grach and Jaime are talking about is supposed to be made available to non-Mayo doctors via AskMayoExpert. This service is by paid subscription only, and my reading of the subscription limitations is that it is only for institutions, or clinics that can afford such things. That eliminates a lot of doctors in private practice.
The video sounds nice, but it doesn’t imply that this information will be widely disseminated, or that patients will have access to it. Sorry Cort, still not excited. Maybe if they update their website…
A big step in the right direction! A couple points in case it helps anyone here
– I’m on the visible app pacing beta (type in “makevisible” in google for some info) & the adjustable HR based pacing notifications have been a game changer for me in helping me recognize how not only physical but the mental overstimulation or pushing through physical back pain/ fatigue also impacts my fatigue/ pacing
– To the point another commenter made about meds not working- we recently realized my POTS specifically was responsive (briefly) to 4 zyrtec (approved by my cardiologist), but sometimes only briefly. I have since thrown the book at my symptoms taking a handful of additional herbal leukotrine inhibitors (lox 5 inhibitors by LE is my favorite), antihistamines and have had a consistent improvement in POTS symptoms specifically, as well as some brain fog. Low histamine diet will be next but that’s a huge undertaking in itself… I still get hives from the bath, but my shortness of breath and tachycardia are trending in the right direction!
Good luck all <3
The low histamine diet was a major game changer for me – after 40+ years dealing with ME/CFS and fibromyalgia, it turns out I have MCAS and histamine Intolerance as well. The diet is a real PITA, weirder than any other I have encountered, but there’s no arguing with results. I still have ME/CFS, but my migraines have disappeared (I had been having 15+ days per month), and most of my brainfog is gone. My asthma is so much improved that I stopped using inhaled corticosteroids, and I need the rescue inhaler only when I have a URI or there’s a wildfire filling the air with smoke (instead of every day). And it turns out that a great deal of my IBS-D was caused by high histamine from food and those pesky mast cells! Plus, of course, the flushing, itching, and burning sensations in my skin. If any of these sound like you, definitely give the diet a try. My physician recommended the book “Is Food Making You Sick”, which is based off the SIGHI website.
Great to read of your improvements Andrea. Diet has been a game changer for me too. 20 years of fibro mostly cleared now with the auto-immune paleo diet. Nightshades, gluten and dairy were all driving chronic inflammation and pain. I also discovered I’m reactive hypoglycaemic (thanks to Cort reporting on Neil McGregor’s work a few years back which tipped me off on this) and so by going low carb and stabilising my blood sugar, no more brain fog, severe energy crashes or sluggish fatigue.
Lots of other strategies and treatment helped as well but diet is a key factor for me.
Me too, a low carb diet is essential for me due to reactive hypoglycemia.
This is VERY interesting. Reactive hypoglycemic is this where a persons eats simple carbs or sugars and then gets low blood sugar? This happens to me! It’s the craziest thing I will eat even fairly healthy balanced meal and then my blood sugar crashes…..
Yes @Jschmidt. If I eat simple carbs or too many in one hit I will have insatiable cravings for more and if I don’t top up constantly for the rest of the day, I crash. Used to happen to me while I was snacking whilst driving which was quite dangerous on a number of occasions. If I crash, I pass out for about half an hour then am fatigued and chronically inflamed for about 24hrs. Definitely a state I avoid at all costs these days.
Hi, A couple of things. First Dr. Benjamin Natelson first dx me maybe 25+ years ago when he had a research study going in NJ. I was bedridden for about 2 years. I eventually got well enough to be able to work again, but always tired and knew my warning signs and could mange it. Then some major events happened and I got sick again, dx with dysautonomia and Immune Deficiencies, and of course things got worse. I would love to get contact info for Dr. Natelson to let him know I was in the first studies and volunteer myself for a case study or something to compare from then. I think that would be interesting!
Second, Metrodora…I was so excited and had been following Dr. Pace. I live in AZ and took the little bit of savings I had, my son flew out to take me and we went. Right before we went Dr. Pace stepped away. I was devastated but had flights and hotels. WE still went, and the place was beautiful, people were amazing, but no drs. I did see the GI, but he said I needed a Neuro GI, which is impossible to find. I also have MALS and Dr. Pace was perfect. I don’t even have a GI in AZ cause I have given up here. Then I heard 2 or 3 others have left. No one returns calls. I don’t know what is going on, haven’t gotten my test results from a procedure about a month ago. This is just heartbreaking. We needed this institute and I am devastated!!!
Sorry to hear that. I heard from another person who did not have a good experience and it was wild, to say the least, to see Dr. Pace step away. It seems that they’re having some birthing pangs. We really need Metrodora to work! I hope they can turn it around.
Thanks, it was crushing. I am at my worst and when I saw the blog on Dr. Pace and then Metrodora it was like my prayers were answered. I am really just hoping she comes back. I just can’t understand why, especially after all the amazing work she has done. Her ”right hand man’ sort of speak, just left as well so that is not encouraging. Please write any updates you hear about. I live for these blogs (is that what you call them….). I have taken so much info from these articles to drs to ask to try or look into. Thank you so much Cort, all you do is so appreciated. I am on a limited budget with disability but would love to help in others ways if possible. I am homebound now and appreciate all that you do for this community. Thank you for everything!!
I just went to Metrodora as well. Just like you I was told Dr. Pace left right before I went, which was so frustrating! Did you see Dr. Berman when you went? I saw Dr. Berman once, the next day had autonomic testing, and right after that I had a saline infusion (which Dr. Berman suggested I try), the next day I had an appointment with one of their occupational therapists and one physical therapist.I found their therapists to be very helpful and understanding. I’m waiting on my autonomic test results and then I’ll have a virtual appointment with Dr. Berman. I didn’t expect much help with my CFS, but hoped they could help diagnose some others issues. I’m hoping they get another gastroenterologist because I need to see one.
I do appreciate Dr. Berman because he wants to get down to the core of my symptoms and try to fix them. He doesn’t put everyone through the same checklist like many doctors. Dr.Berman did tell me that the Bateman Horne clinic in SLC has a two year waitlist. Because of that he is trying to learn and use the same forms of treatment and tactics to help CFS patients. The truth is I don’t think Metrodora knows a lot about CFS yet, but they are hungry to learn and help out. However they still need to realize just how low our quality of life is. They are trying to understand, but it hasn’t fully set in yet.
My experience there was definitely better there than my experience with Mayo. My mom called Mayo and they suggested that I needed to be psychically evaluated and treated ,that I had teen angst, and should probably be put on antidepressants.🙄 This was three years ago. I’m glad that they are finally opening their eyes even if it’s just a start.
I am glad your mom didn’t listen to Mayo…..So you thought Dr. Berman was good? He is listed as an internist so I figured he is a regular pcp so not a specialist, but it sounds like he is better then most. I saw Dr. Yap who is a GI and wonderful, but not a neuro GI which I need. If you don’t need neuro GI is he great! I had autonomic testing a few times over the years, and each time different results. I don’t put much weight on TTT since things change day to day with us and having CFS I don’t think we fit the normal POTS criteria. Definitely dysautonomia. I hope you find some answers. It is such a long frustrating road. If Metrodora gets its act together, it could be an amazing place. I also tried to get into Bateman Horne…..they said they weren’t taking new patients…..Good luck!
Yes I did think Dr. Berman was good. What was interesting about him was that he openly told us that he didn’t agree with some of the other doctors way of treatment at Metrodora, he hates it when doctors just run you through a checklist and then when it’s over, dismiss you. I thought that was kind of funny.🙃 What I really appreciated about him was that he took into account all of my concerns and symptoms. I have had tons of testing done in the past by a holistic doctor who found bacteria throughout my entire body, and even though tests say it’s not a lot, I think it’s what gave me CFS. But because it’s such a small amount of bacteria, doctors haven’t seemed super concerned or just don’t know how to read the holistic doctors testing. I told Dr. Berman I was concerned with it and want to get rid of it and he took that into account. He also unexpectedly brought up that in addition to CFS he thinks I have MCAS,POTS, and possibly EDS. I definitely check multiple boxes in all of those illnesses, hence the autonomic tests. He also really wanted me to try saline infusions for my POTS symptoms and hoped it would help me not crash as hard. while I was there. I had 2 and they definitely helped me not have such a bad crash! I might end up getting a PICC line put in so I can get infusions at home. The positive thing about saline infusions is there aren’t any negative side effects like medications. We did talk to him about seeing the neurologist there and he said he didn’t think I needed to. The Metrodora neurologist seemed to specialize in headaches which I don’t have so I didn’t see her.My doctor at home wants to leave no stone unturned and thinks I should see one just to be sure.
If anything I will keep seeing their therapists. It’s difficult because I don’t live there, but they were so understanding and I think they could really help me not lose the remaining muscle I have and help with my EDS symptoms they were amazing and worth seeing.
Overall my trip there was definitely worth it, I didn’t expect much help with my CFS, we need actual CFS specialists, but if I can get help with my other illnesses it could help improve my CFS who knows?
That is interesting. I know my mono, which turned into EBV, and then that lead to dx of CFS . Anything that shouldn’t be in your body I think matters. I can’t stand when tests come back abnormal and they say, oh it is fine….Than why did you order it and why is it flagged!!!! I believe if you feel something is a reason or core of a symptom/issues, keep fighting until someone HEARS you!! You are right to believe that bacteria is an issue….at least I think. I am glad you had a good experience. I really wanted to try the pt there, but I am in AZ and can’t fly out for that. No matter what I try, I get sicker and that is for sure the PEM and CFS. Most pts don’t get it. I have been on fluids for 5 years. All I can say is be careful. I was going to be on for just a month to help get me back to some baseline. I was so bad. I got a pic line. They then said I needed 2 liters I was so dehydrated. I have been doing 2 L of saline every night (I run it overnight because I have to do it slow or I get sick) for 5 years. I did get a port eventually. I tried to get off, but never have been stable enough to do so. I have gained a lot of weight and have third spacing going on. I had a BVA test, found out about it from Health Rising! was amazing and offered great information, but no one knows what to do of course….anyway…says I am severely hypovolemic, low blood volume and fluid is interstitial…. no one can figure out why. I am an extreme case though. Most people love it and they feel better. I would say try to do it maybe every other day or something, to see if you notice a difference. I do want to go back to Metrodora for the smart pill. Everywhere else only has the one for 8 hrs and you wear a belt. I just don’t want to make a trip for that, but I will think about Dr. Berman. Thank you for sharing your experience. We do need another Bateman Horne Clinic!!!
Sorry to bother you again Jill!😂
I also had EBV along with bronchitis when I first got sick, those both were the kickers.
I understand not going to the PT’s at Metrodora since you don’t live in SLC. I also don’t live there, and like you had to fly there. I did not want to see them since pt’s can be awful I know the dangers of GET! But I stayed open (but guarded) about it. If you were wondering I saw Katie Johnson who was brilliant. She didn’t understand how ill I was at first (being a young 19 year old I don’t look sick), but I really pushed to make her understand how debilitating and serious CFS is. I’m bedbound 23 hours of the day so I wasn’t going to put up with being told I needed exercise, and she wasn’t like that at all. She gave me some crazy easy exercises to do in bed and told me I can communicate through email with her so I don’t have to pay for a virtual session. I also saw Ben Ostler he is the one who thinks I have EDS. If you end up going to Dr. Berman and he suggests pt, I recommend being open to it because they are very understanding if you explain your situation, and want you to be completely honest on your opinion about what they want you to do. Metrodora is definitely not the savior of CFS, but they can possibly help. If they can communicate with my doctor at home and work together to help me I’m all for trying. I’m desperate at this point because I’m rapidly deteriorating in all ways possible. 😵💫 Hang in there Jill.❤️
Not a bother…..I am so sorry you are so ill and so young….I really appreciate all the info. I will probably go back at some point. I totally understand the deteriorating. It is overwhelming and scary. Hang in there as well!!
Is the Phoenix Mayo campus treating ME also, or just the Rochester campus?
FINALLY ! Mayo was surprisingly slow to recognize their GET/CBT suggestions did more harm than good. Kudos also to the Bateman Horne Center for producing terrific cheat sheets about how to treat us in many scenarios. I have a folder ready in my 911 bag with their description of ME and how to care for us whether in an ER or before any surgery.They ask PCP providers to listen to us, believe us and follow some specific guidelines to help us. That folder has saved my life 3 times. Hopefully going forward, medical schools will include these complex autoimmune conditions in their courses. For now, we just need a letter to present to Long Term Care insurance so they’ll accept our need for in-home help. Regular doctor records show normal labs and we’re often denied a chance for a slightly better life until there’s a biomarker and treatment possibilities. Cheers to Dr Davis, OMF, BHC, Health Rising and SolveME. Bless you all.
Thanks for sharing this good news and offering a positive frame for interpreting it. It’s true that the Mayo clinic “experts” don’t appear to know anything more about ME/CFS than most of us who have been dealing with and self-educating to survive. I saw nothing in their list of strategies for dealing with various symptoms that I haven’t heard of or tried before. However, this a potentially a huge win in terms of legitimizing ME/CFS in the eyes of mainstream medicine, and we need that so badly. The more ME/CFS is recognized as a very real and serious health condition, the more likely research grants for studying it will be approved, and maybe, one day, insurance companies will actually start to cover more of the tests and treatments. Thanks to everyone who has put in the work to get us this far. Let this little snowball keep rolling and growing bigger.
“However, this a potentially a huge win in terms of legitimizing ME/CFS in the eyes of mainstream medicine, and we need that so badly.” Yes! Let this snowball turn into an avalanche of understanding and recognition 🙂
Thank you Cort.
I was shocked after returning home from Mayo (2020) to discover that in all the tests they administered to exclude other illnesses, they had not done a test for Lyme. When I called to ask about this they said, “It was not part of their protocol.” I find this odd.
Equally disappointing to me that nowhere in their “Table of Management Considerations” is anything related to mindfulness.
I’m not a huge mindfulness guy, but it has definitely bitten off a chunk of my pain (physical and psychological). Its absence to me suggests Mayo has not come as far as this article suggests. My anger at them as not been mitigated.
Hi Brian – I certainly understand your dismay that Mayo has not moved further than it has. I do want to point out, though, that the blog did not mean to suggest that Mayo was the be-all and end-all for ME/CFS treatment or that it matched up with what an ME/CFS expert might offer.
The article says it all – it’s a concise guide to ME/CFS diagnosis and management.
and the blog stated that “Mayo might not have the answer for people with ME/CFS, but it should finally be able to at least manage them appropriately.”
The chief benefit so far as I see it is that Mayo recognizes that ME/CFS is a real and serious disorder and it recognizes that there are some standard treatments can help and it’s directing its doctors to provide those treatments.
If Mayo is to be all it says it is – that is, the premier health care hospital chain in the U.S. – it needs to go much further. This is a start- not hopefully, the end.
Hi Brian: While I totally agree with all the comments about Mayo’s lack of knowledge regarding ME/CFS, I did go thru their pain program & it did include mindfulness & was very good for my pain. However, because it is based on CBT, which works well for pain, for sleep, etc., it is NOT good for those with ME/CFS. Plus they teach GET, which is the opposite of what we need with ME: pacing. So I came home with pain relief, but an exacerbation of my ME. When I told the dr/director of the program (PHX) that I had ME/CFS & the schedule (8-4:30 every day M-F) was exhausting me, she said, “Well sometimes I am tired at the end of the day, too”. Definitely NO understanding there of my ME/fatigue!
Well, this is long-awaited good news.
They can’t go backwards now. I look forward to the day when a lot of drs feel a whole lot of embarrassment and shame as to how they have treated their patients with CFS.
Cort, Thank you, again…
A lot of doctors are going to have to put on their big boy and big girl pants and acknowledge that they’ve been wrong and have caused a lot of hurt. It takes big boys and girls to do that – hopefully most of them are big enough to do that.
I would love to think that most of them would be humble enough to do so, but in my decades long struggle, I’m afraid so many doctors would never admit fallibility for anything. And you know, in the end, it doesn’t really matter. If at last we get the recognition, care and compassion that have been so withheld, that’s all that matters..
You want good news? I would go with the New Scientist magazine’s consistent coverage of ME/CFS over the past few years.
Their latest issue has a cover story on the microbiome, and the story touches on ME/CFS.
Do you have a link to the quote?“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection” that “is common and debilitating” which produces a “lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure”
https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2823%2900402-0
Yes, it’s all good, even if it is just Rochester clinic.
Mayo HAVE TO go slow to keep their reputation. If they would add all the new and, frankly, not scientificly proofed they would not be that monument in medicin they are. I guess anyway.
I wonder how they work behind those outer walls, I want to be a fly on their walls!
I was diagnosed in 2018, so quite recently, I’m still “gaslighting” myself – I guess you can call it. Partly because of my background in science, and in been working in a hospital for a long time (alas no longer able). I’m dyed in the much needed scepticism and slowness of science.
That is also the beauty of science, always curious, always searching, and as ie Ron Davis put’s it: You have to try to prove your hypotesises and findings wrong at all costs before they can be considered true.
As bad as Covid was, I loved to be in the midst of science and research, and of course frustrated at the slow processes that really were extremely fast …
If I understand correctly, the Mayo clinic is a major player in the medical world in the US. If ME/CFS is really recognized there with the right approach and respect for the patient and the help he or she needs, that will be a major progress.
Even if there is little they can do in terms of treatment. It saves a lot of psychological suffering and stress if we are treated normally by doctors. That alone is a huge gain.
I think that, especially at the beginning of the disease, this can give patients a better chance of some recovery.
This is absolutely a major ME/CFS moment!
The moments – that take the form of credible & widely accepted resources which provide credibility to ME – that stand out, imo:
. 2015 – IOM (now NAS) report, commissioned by NIH
. Whenever it was that CDC finally updated their ME/CFS web page
. 2023 – these Mayo Clinic Proceedings
I forgot one (probably others, too):
. 2021 Mayo Clinic ME Consensus Recommendations (authors are a who’s who of excellent ME docs, including Dr Bateman, Dr Klimas, Dr Komaroff, etc.)
Klimas will not help you. Don’t waste your time.
Cort, I don’t have to tell you about the bad experiences I had at the AZ Mayo Clinic…one, 32 years ago when I first became ill and they told me I was depressed and that i should see a therapist. Then in 2015 after i developed the inflammatory lesion on my spinal cord and they basically rolled their eyes. I cant describe the effect all that had on my life and my relationships. I hope this change saves many from the pain I experienced. I also hope the AZ clinic is following suit. Thanks for reporting this.
I certainly don’t and I thought of you when I was writing the blog.
Finally! Maybe this time things will get better. To all those doctors who dismissed us and tried to push us under the carpet, I hope this report hurts as much as your lack of care hurts us. To all those who have tried against the odds to help us, please don’t give up yet. Thank you so much Cort for all your hard work. Our time is coming!
This is a great improvement by Mayo Clinic, super happy to see it!!! We have so many many symptoms, there are many supplements and meds that may help, but may also have side effects, so it can be super confusing when we go along and try one thing after another. Been there, done that. When it comes to making energy, food has always been how humans make energy. Let food be thy medicine is basic to all humans. Real food, not this modern day ultra processed junk. Real food.
It’s a start but I will be super impressed once they address non-anemic iron deficiency. Since getting treated with iron and taking LDN, I’m a new person.
I would like a personal apology or some sort of accountability for the crippling medical trauma I incurred at Mayo Clinic seeking a diagnosis for my textbook symptoms of ME/CFS in 2020. Specifically Internal Medicine and the “CFS/Fibro” division. Victim-blaming, minimizing, patronizing, misogyny and “you just gotta push through if you want it bad enough; sign up for our $6k class where we’ll teach you how to set goals”” were not on my bingo card that year. They sent me home with an After Visit Summary that included instructions on how to download a meditation app from the App Store, (with instructions for both Apple and Android users). I’d never felt more hopeless and helpless in my life. I thought I was dying. The experience changed me. Almost 4 years later I refuse to go back to the doctor due to trauma. This news is bittersweet for me. It’s ultimately good but just stings a little reliving that experience. Thank you to MEAction for all that you do.
I hope Mayo reads this…
When oh when will these ‘specialist’s’ start treating underlying conditions, y’know, like tick borne diseases, reactivated viruses like EBV etc. Really BASIC things like pulling out bio toxins with Cholestyramine & helping cells & Mitochondria to repair with sunflower lecithin. I should actually write a book on how I’ve gone from very severe to moderate using BASIC methods & on a budget of disability benefits.
I hope you’ll write that book or paper Craig. 🙂 I really like lecithin by the way.
It’s time for the medical community to start taking this illness seriously. Chronic Fatigue is devastating people’s lives and it seems like no one is listening. People feell like they are being ignored and tricked into going to every medical doctor and specialist only to be told all blood work looks normal. For blood work to be normal and the person to still be chronically fatigued is not normal at all. God help all of us suffering in silence.
I have had Fibro or ME, since I was eight. It started right after a surgery that went a little wrong (appendectomy). I was eight years old. I am now 70. I have saved all my money to be able to treat myself in non-conventional ways, because I always had bad reactions to most pharmaceuticals and traditional medicine. I spend $30,000 yearly on quality of life treatments.
Your blog accidentally popped up on my screen yesterday. Your announcement about Mayo (I live close to the Phoenix Campus) was such a release from years of doubting myself and thinking I was simply a weakling, out-of-shape human. I commend all your efforts. I am in total joy this evening and will spread your Website address far and wide. Somehow, life feels better. A burden lifted. My heartfelt thanks. Yes, I signed up for a call from Mayo.
Eighteen months ago I assumed that Mayo would be THE place for Long Covid to get treated. Little did I know! Nice to see Mayo getting it together. Agreed that this is significant.
(I know ME/CFS and Long Covid aren’t the same thing…)
I have been suffering for so long and cannot get proper help, my insurance does not cover this, although you have made progress, I will probably not live to see it help me…
All the best
BTW researchers at the University of Pennsylvania believe that long Covid is the result of the SARS Covid-2 virus staying in the gut and disrupting the production of serotonin which in turn causes disruption in the brain and nervous system. https://www.pennmedicine.org/news/news-releases/2023/october/penn-study-finds-serotonin-reduction-causes-long-covid-symptoms
What they don’t seem to realize is that many of the cases of ME/CFS or related conditions are caused or worsened by the very things they might consider or implement as treatments. SSRIs, SNRIs, other antidepressants, antibiotics, PPIs, vaccines, escaped engineered viruses created to learn about viruses to “protect” us all from the next pandemic. “First do no harm.”
Yes! They tried to give me no less than 8 vaccines in one day despite me having a chronically depressed immune system.
Mayo seems to suck. Cleveland Clinic really sucks (personal experience). They’re here to make money. It’s not their fault really. Well.. some are shameless opportunists without a soul. But many are just cogs in a Medical (“medical experimentation”) -Public Health-Political-Mainstream Media-Insurance Company revolving door of corruption. A Diffusion of Responsibility problem. We in the US have a “healthcare for profit” system. Until that changes, nothing will change. The only thing that will move us forward is a medical revolution, a paradigm shift. Many of the fundamental assumptions by which they operate are WRONG. Blatantly wrong. But Med Schools don’t change. Their textbooks don’t change. After decades, and decades, they are teaching the same bullshit. With this bullshit, they will diagnose you with anxiety/depression. Then try to convince you you need anti anxiety or depression medication, And that seems to actually be a big part of the problem (PSSD?). It’s not that they’re simply inept or negligent, rather they are CAUSING most of the problems. And/or exacerbating the symptoms with unproven treatments. You know, the drugs you see on TV where 25 seconds of the 30 second ad are the “side effects.” Usually death and blindness are two of the “side effects.” Which is a strange usage of language. When you start talking about death as one of those pesky side effects, then things get strange. A bit of a rant. Sorry. Thanks for posting Cort. And for all of your work.
The late Dr. Paul Cheney, ME/CFS specialist, believed that FMS was the pain portion of CFS, which he admitted not everyone with CFS has. Is it possible FMS can also be part of easier to manage diagnoses, like EDS or MCAS? Or is there reason to still believe FMS is a separate thing? I have been diagnosed, by the way, with all of the above listed conditions, so just wondering.
Cort, I have been a Mayo patient since 2007. An internist there gave me my original diagnosis of CFS. I went back one other time after that. This year I called to get an appointment and was denied despite having a patient number. I had to fill out a form stating why I was requesting an appointment. I can only believe in my heart that despite the new attitude towards ME/CFS that is wasn’t serious enough to see me. I am very disappointed. They continue to send me requests for donations. I can give money but not be a patient!
My love affair with Mayo has been a disappointing exercise in futility which started in 2018. I was at Mayo multiple times in 2023 desperately seeking help for my perpetual dysautonomia MCAS GI issues plus neck and back and joint pain issues and not once was anything suggested to help other than steroids. No one acknowledged my external diagnoses which include MCAS and dysautonomia and OH etc. They failed to see the two locations where scoliosis has developed in my spine and suggested steroid shots. Luckily, I saw Dr. Raj Singh with Barrows and he correctly diagnosed me and told me steroid injections were not advised and put me in a back brace and neck collar and physical therapy. Mayo has a big name but they refuse to see things that are clearly related for example, in the last month, I tested positive once again for reoccurring tickborne infections that are in my bloodstream, and this would explain all the myriad of symptoms that have been plaguing me and my immune system for the last five years that Mayo refuses to see, or even relate to ME/CFS. It’s hard for me not to be bitter about Mayo. They have happily billed my health insurance plan in excess of $400,000. At the end of the day when every doctor there acts like I don’t have a legitimate diagnosis despite having numerous auto immune markers, consistent with rheumatoid arthritis, diabetes, connective, tissue disease they cannot put the pieces together or at least they refuse to do so. It’s less disheartening for me to fly out of state to get actual help and care. Neuroveda Health (Dr. Ilene Ruhoy) and Center for Complex Diseases (Dr. David Kaufman) are the only doctors I’ve met who are able to comprehend the complexities of the septad.
Ridiculous. Yep, my opinion only, if you say something like MCAS, Dysautonomia, MCAS, Chronic Fatigue, etc, you’ll be the brunt of their jokes on MD forums. Again, the current system is broken beyond repair.
Yes and add Lyme disease to the list. Heck they will smirk in front of your face.
After reading this, I called the Mayo Clinic in Phoenix. The woman who answered said she’d heard that there had been 3 other “calls about Fibromyalgia that day.” She didn’t know anything about this. I gave her the site address. She went there and then tried to discourage my interest, saying she thought this activity would be limited to the Rochester Mayo Campus. I told her she should think more broadly…that she’ll be getting more calls, that some people are willing to travel and people can be interviewed for research by phone. She said she’d call back after talking with the neurology dept. She promised. Two days later, no call back. I plan to circulate this news far and wide. At least I warned her.
I met with Dr Grach at Mayo in Rochester, MN after my neurologist there, who treats me for MS, recognized my symptoms and referred me. I was diagnosed with ME/CFS by Dr Grach and her team in September of this year.
I’m incredibly grateful that Mayo is recognizing this disorder and educating its other specialists to recognize it. I had been struggling most of this year with extreme fatigue which we attributed to an MS flare – but when my recovery wasn’t progressing due to PEM and there was a respiratory infection also as a part of the onset, my neurologist suspected ME.
My experience with Mayo has so far been good and I did take their course on managing ME/CFS together with others with the condition as well as some people with fibromyalgia, which was focused on self care but most helpfully explained to me what exactly is happening in my body.
I’m hopeful this plus the article just published brings more research opportunities to the clinic.
Thanks for relaying your experience Sara and good luck with everything! The overlap between MS and ME/cFS – starting with an EBV trigger – fascinating.
The increase of these myriad of symptoms in people really makes you think about the possibility of some form of biotoxin or something being introduced by someone with an agenda onto the general population. Either that or something we aren’t aware of but we are all using/consuming is leading to this pathophysiology. Sure COVID is a big part of this but millions were suffering from this before covid too. I shouldn’t go from being a healthy 25 year old going 6 days a week to the gym to bed bound at 26 with exactly every symptom described here that everyone else is having without any apparent cause. I will never rule out the possibility that this is deliberately being caused by certain people with greedy and immoral goals.
I live in MN and used to have easy access to Mayo, but no more, because I have zero support. I had read about this great Mayo news elsewhere recently and sent a link to the article to my doctor, my two middle-aged children, and my brother. My doc responded by saying, “Aren’t we lucky to have Mayo here in MN.” My family sent me an email on how they would like to fix me and get me back to normal. (They don’t believe in ME/CFS). I was diagnosed years ago by a ME/CFS specialist in Minneapolis. So hard to live this way! If I could get to Mayo I’d leave right now.