How to educate our medical professionals?

[Cher Noreen]

I moved from Seattle to a rural area of Washington State a few years ago and finally decided to switch medical providers instead of traveling an hour to see my previous GP. In July 2020 I started seeing an ARNP at my local clinic. Despite having little experience with ME/CFS she seemed interested in learning more about it and providing me with the best possible care.

The Problem
My GP even made sure to attend a CME session on CFS at the FMX 2020 conference sponsored by the American Academy of Family Physicians, to get a better understanding of what is being recommended for me. What she learned there has led to some confusion between us that I find concerning.

Prior to the conference I had told her about the major concerns of over exertion with ME/CFS. After the conference she has placed a significant emphasis on getting me to exercise more. In her words, "even if it's a 5 minute walk one day and you only increase it by half a minute the next day."

She has now told me twice that this is what she learned at the conference. She doesn't take whatever they say as gospel truth, and asked me to send her the research papers I was reading about the need to keep my heart rate low, so she can evaluate for herself. I am so appreciative of this attitude, because I am definitely not a medical professional and have no training in evaluating research.

But, I have ME/CFS and my plate at the time was too full to find those studies again. I believe this lack of follow-through also damaged my credibility in her eyes.

My Current Condition
In the months since FMX while working on some other treatments, she became concerned about my heartrate. I have since been diagnosed with Congestive Heart Failure with a 40% ejection factor in my left ventricle and an enlarged left ventricle. This results in tachycardia (racing heart beat). Prior to diagnosis I had a 30-day event monitor which recorded my high average heart rate at 160 bpm. (My low average was 70 bpm.) I was very sedentary during this time. Per a coronary angiogram my arteries are wide open and my valves work perfectly. Those were the top 2 suspected causes for my heart failure so now it's of unknown origin. My cardiologist is trying to reduce my heart rate via pharmaceuticals but this is a process that takes months. In the meantime, I was recently sent to the ED due to fluctuating blood pressure, vision blackouts, and light-headedness. We reduced some other medications but after performing orthostatic vital sign measurement and determining my heart rate increase wasn't due to dehydration, the ED Dr wants me to be evaluated for POTS. I have no idea how these 2 conditions combined would affect my anaerobic threshold.

In the meantime, both my cardiologist and my GP have encouraged me to exercise more than I currently am. Particularly cardio to strengthen my heart.

My ME/CFS History
The first time I noticed that I felt horrible the day after cardio exercise was in 2007. At that time I was also told I kept randomly passing out because my blood pressure was too low. Since I had no insurance, there was no testing performed. I had a dramatic worsening of symptoms in 2009. I was first told I likely had CFS in 2011. It officially became part of my medical records in 2016. But until there is a clear understanding of ME/CFS I am completely open to being diagnosed with and treated for other things. As long as that treatment is not contraindicated for the health of patients with ME/CFS.

In 2012, before we understood the duplicity of the PACE trials, I tried to manage my own GET program. It ended when I had my second major crash that I never fully recovered from. I created a basic exercise program that I thought I could tolerate easily based on my current levels of activity. It included treadmill work and basic free-weight muscle training 3-5x/week. I think I started a new program every week for a month. Each week I had to lower my expectations from where I was the week before because by day 3 I could barely manage half the treadmill time at a slow walk. Day 1 would be excellent, day 2 would be a struggle, and day 3 would be torture. I tried alternating cardio days and weight training days. My goal was to get a consistent level of exercise every day. My first week I took it nice and easy for days 4-7, with no time in the gym. Week 2 days 4-7 were spent going through the motions of life, but in a mental stupor. Week 3 required a couple days in bed. At week 4 I decided to embrace the push/crash cycle by picking a limited number of activities to do per week and rest in between.

I've had 2 more major crashes since then, one caused by a destination concert in 2013, the other by all-day wedding duties as a bridesmaid in 2015. Each of these crashes resulted in increasing amounts of time in recovery. Every time I pulled myself out of bed as soon as I could in order to continue living as much life as possible but didn't regain the level I had before. It's important to note here that I had other crashes that seemed as rough, but I recovered my previous level of activity. I don't know why.

In 2014, I was still participating in regular swing dancing events and rock climbing, in addition to my regular body weight/yoga practices. If I went swing dancing, something I've loved and done for 20 years, that was the only activity I did outside the home for the entire week. And I made sure to sit and rest for 20-30 minutes after every dance I did. With rock climbing I could manage to go twice per week, still manage a morning walk of 4 blocks round trip for coffee, and a couple of afternoon/evening drives. But I couldn't do a trip to the grocery store and a visit to the climbing gym on the same day. This is particularly profound because I lived in an apartment above the grocery store. I literally took an elevator to the grocery store, did my shopping, and pushed the shopping cart directly into my kitchen. I believe I could tolerate this much climbing because my individual climbs were no longer than 10 minutes, I generally did around 1 per hour, and resting/waiting time was done lounging on soft crash mats. The latter half of 2014 didn't include any climbing or dancing, but my daily walks increased to 2-3/day with up to 8 blocks round trip. I believe this was possible because of improved sleep habits, reduced interpersonal stress, and more attention to my body's moment-to-moment needs such as a slower pace or a short rest mid-walk on rough days. (Possible due to separation from my now ex-husband.)

After the 2015 wedding of friends, I have been mostly housebound. In the winter months I am mostly bedbound and zombie-like so I live for the summer months when I actually feel present again.

Given my past, I think my fear of overdoing my activity is well-founded. Especially in conjunction with the other stories of severe and very severe patients. I also believe that my history shows a clear desire and willingness to participate in exercise.

Back To The Problem
But I try to remember that my GP didn't know me then. All she knows is the obese, middle-aged woman who hasn't worked in a decade, shows up in pajamas, and keeps giving excuses for why she needs to do less activity and citing mysterious "amazing" researchers without providing any supporting documentation.

And she is trying to weigh what I'm saying against the best practices for the elements of my health that she has actually diagnosed (rather than inherited) AND what she's been taught by the American Academy of Family Physicians about the conditions I was diagnosed with prior to seeing her. If I were in her shoes, I'd pat the crazy woman on the head and say, "Don't you just have the cutest little delusions of understanding biology." But I'm a smart ass and she's a professional. And nice.

Call To Action
I've been trying to Google-fu what the AAFP recommends for ME/CFS. It doesn't show up in any of their online CME courses. I finally found a schedule for the CME sessions for FMX 2020, but there was no mention of Chronic Fatigue Syndrome or ME. They did have a session called "Fatigue - A Tiresome Topic." This title does not inspire confidence in the presentation.

Doing a site search for CFS shows an article from 2012 that references the PACE trials as evidence that GET is the way to treat us. Then there is a 2013 letter from Dr. Bateman disputing the 2012 article, along with a rebuttal from some Dr. Joe Yancey. That's it. That's the most recent CFS literature available from AAFP.

I know the CDC has a pretty collection of handouts for providers that is quickly digestible. But it doesn't include any linked references. And the Feb 2021 report on ME/CFS Treatments still emphasises exercise, without any mention of being careful not to exacerbate PEM, even though the CDC's own handouts are adamant about it. (But even those handouts only include one small, easily overlooked sentence about keeping the heart rate below anaerobic levels.)

So, do you guys know of a nicely compiled body of evidence, with professional backing, that shows why my GP should follow the CDC's handouts and take those CE classes instead of the ones offered by AAFP? *Is there enough solid evidence to support that?* Or is the strongest evidence anecdotal?

How do we possibly refute what they are learning in their professional education classes without sounding like we're running around with tinfoil hats on our heads?

 

[Judee]

You could point her to some of these CME courses: https://www.meaction.net/cme-courses/

Or you could show her Workwell Foundations recommendations. Here is a page of their resources: https://workwellfoundation.org/resources/

I like this document. It's not a really long read and they also include sources at the end: https://workwellfoundation.org/wp-c...tic-Approach-to-Exercise-for-CFS-patients.pdf (Easy to give to a busy doctor however, read it first yourself to make sure it fits your goals with her.)

They also have some continuing education courses: https://workwellfoundation.org/resources/

 

[Learner1]

I moved from Seattle to a rural area of Washington State a few years ago and finally decided to switch medical providers instead of traveling an hour to see my previous GP. In July 2020 I started seeing an ARNP at my local clinic. Despite having little experience with ME/CFS she seemed interested in learning more about it and providing me with the best possible care.

The Problem
My GP even made sure to attend a CME session on CFS at the FMX 2020 conference sponsored by the American Academy of Family Physicians, to get a better understanding of what is being recommended for me. What she learned there has led to some confusion between us that I find concerning.

Prior to the conference I had told her about the major concerns of over exertion with ME/CFS. After the conference she has placed a significant emphasis on getting me to exercise more. In her words, "even if it's a 5 minute walk one day and you only increase it by half a minute the next day."

She has now told me twice that this is what she learned at the conference. She doesn't take whatever they say as gospel truth, and asked me to send her the research papers I was reading about the need to keep my heart rate low, so she can evaluate for herself. I am so appreciative of this attitude, because I am definitely not a medical professional and have no training in evaluating research.

But, I have ME/CFS and my plate at the time was too full to find those studies again. I believe this lack of follow-through also damaged my credibility in her eyes.

My Current Condition
In the months since FMX while working on some other treatments, she became concerned about my heartrate. I have since been diagnosed with Congestive Heart Failure with a 40% ejection factor in my left ventricle and an enlarged left ventricle. This results in tachycardia (racing heart beat). Prior to diagnosis I had a 30-day event monitor which recorded my high average heart rate at 160 bpm. (My low average was 70 bpm.) I was very sedentary during this time. Per a coronary angiogram my arteries are wide open and my valves work perfectly. Those were the top 2 suspected causes for my heart failure so now it's of unknown origin. My cardiologist is trying to reduce my heart rate via pharmaceuticals but this is a process that takes months. In the meantime, I was recently sent to the ED due to fluctuating blood pressure, vision blackouts, and light-headedness. We reduced some other medications but after performing orthostatic vital sign measurement and determining my heart rate increase wasn't due to dehydration, the ED Dr wants me to be evaluated for POTS. I have no idea how these 2 conditions combined would affect my anaerobic threshold.

In the meantime, both my cardiologist and my GP have encouraged me to exercise more than I currently am. Particularly cardio to strengthen my heart.

My ME/CFS History
The first time I noticed that I felt horrible the day after cardio exercise was in 2007. At that time I was also told I kept randomly passing out because my blood pressure was too low. Since I had no insurance, there was no testing performed. I had a dramatic worsening of symptoms in 2009. I was first told I likely had CFS in 2011. It officially became part of my medical records in 2016. But until there is a clear understanding of ME/CFS I am completely open to being diagnosed with and treated for other things. As long as that treatment is not contraindicated for the health of patients with ME/CFS.

In 2012, before we understood the duplicity of the PACE trials, I tried to manage my own GET program. It ended when I had my second major crash that I never fully recovered from. I created a basic exercise program that I thought I could tolerate easily based on my current levels of activity. It included treadmill work and basic free-weight muscle training 3-5x/week. I think I started a new program every week for a month. Each week I had to lower my expectations from where I was the week before because by day 3 I could barely manage half the treadmill time at a slow walk. Day 1 would be excellent, day 2 would be a struggle, and day 3 would be torture. I tried alternating cardio days and weight training days. My goal was to get a consistent level of exercise every day. My first week I took it nice and easy for days 4-7, with no time in the gym. Week 2 days 4-7 were spent going through the motions of life, but in a mental stupor. Week 3 required a couple days in bed. At week 4 I decided to embrace the push/crash cycle by picking a limited number of activities to do per week and rest in between.

I've had 2 more major crashes since then, one caused by a destination concert in 2013, the other by all-day wedding duties as a bridesmaid in 2015. Each of these crashes resulted in increasing amounts of time in recovery. Every time I pulled myself out of bed as soon as I could in order to continue living as much life as possible but didn't regain the level I had before. It's important to note here that I had other crashes that seemed as rough, but I recovered my previous level of activity. I don't know why.

In 2014, I was still participating in regular swing dancing events and rock climbing, in addition to my regular body weight/yoga practices. If I went swing dancing, something I've loved and done for 20 years, that was the only activity I did outside the home for the entire week. And I made sure to sit and rest for 20-30 minutes after every dance I did. With rock climbing I could manage to go twice per week, still manage a morning walk of 4 blocks round trip for coffee, and a couple of afternoon/evening drives. But I couldn't do a trip to the grocery store and a visit to the climbing gym on the same day. This is particularly profound because I lived in an apartment above the grocery store. I literally took an elevator to the grocery store, did my shopping, and pushed the shopping cart directly into my kitchen. I believe I could tolerate this much climbing because my individual climbs were no longer than 10 minutes, I generally did around 1 per hour, and resting/waiting time was done lounging on soft crash mats. The latter half of 2014 didn't include any climbing or dancing, but my daily walks increased to 2-3/day with up to 8 blocks round trip. I believe this was possible because of improved sleep habits, reduced interpersonal stress, and more attention to my body's moment-to-moment needs such as a slower pace or a short rest mid-walk on rough days. (Possible due to separation from my now ex-husband.)

After the 2015 wedding of friends, I have been mostly housebound. In the winter months I am mostly bedbound and zombie-like so I live for the summer months when I actually feel present again.

Given my past, I think my fear of overdoing my activity is well-founded. Especially in conjunction with the other stories of severe and very severe patients. I also believe that my history shows a clear desire and willingness to participate in exercise.

Back To The Problem
But I try to remember that my GP didn't know me then. All she knows is the obese, middle-aged woman who hasn't worked in a decade, shows up in pajamas, and keeps giving excuses for why she needs to do less activity and citing mysterious "amazing" researchers without providing any supporting documentation.

And she is trying to weigh what I'm saying against the best practices for the elements of my health that she has actually diagnosed (rather than inherited) AND what she's been taught by the American Academy of Family Physicians about the conditions I was diagnosed with prior to seeing her. If I were in her shoes, I'd pat the crazy woman on the head and say, "Don't you just have the cutest little delusions of understanding biology." But I'm a smart ass and she's a professional. And nice.

Call To Action
I've been trying to Google-fu what the AAFP recommends for ME/CFS. It doesn't show up in any of their online CME courses. I finally found a schedule for the CME sessions for FMX 2020, but there was no mention of Chronic Fatigue Syndrome or ME. They did have a session called "Fatigue - A Tiresome Topic." This title does not inspire confidence in the presentation.

Doing a site search for CFS shows an article from 2012 that references the PACE trials as evidence that GET is the way to treat us. Then there is a 2013 letter from Dr. Bateman disputing the 2012 article, along with a rebuttal from some Dr. Joe Yancey. That's it. That's the most recent CFS literature available from AAFP.

I know the CDC has a pretty collection of handouts for providers that is quickly digestible. But it doesn't include any linked references. And the Feb 2021 report on ME/CFS Treatments still emphasises exercise, without any mention of being careful not to exacerbate PEM, even though the CDC's own handouts are adamant about it. (But even those handouts only include one small, easily overlooked sentence about keeping the heart rate below anaerobic levels.)

So, do you guys know of a nicely compiled body of evidence, with professional backing, that shows why my GP should follow the CDC's handouts and take those CE classes instead of the ones offered by AAFP? *Is there enough solid evidence to support that?* Or is the strongest evidence anecdotal?

How do we possibly refute what they are learning in their professional education classes without sounding like we're running around with tinfoil hats on our heads?

UpToDate, an important doctor tool, had years out of date recommendations for CBT and graded exercise until quite recently. So if your GP is reading an old copy of that, it could be part of the problem.

If I were in your shoes, having lived in the Seattle area, and in Washington State, these are the things that I might do:

1. See a Bastyr trained naturopathic doctor who may be able to help you with someone enlightened testing and some important aspects of your disease
2. Go to an autonomic nervous system doctor, either at University of Washington or at Neurological Associates in Kirkland and do autonomic nervous system testing. Both have the equipment to do it, as far as I know, they're the only ones in Washington State. But this would help you with maybe some of your cardiac and nervous system issues.
3. Arm yourself with recent research on ME/CFS, and organize it neatly in a binder, with a table of contents for your GP. Get the Institute of Medicine/National Academy of Sciences 2015 Beyond ME/CFS clinicians guide and put that first. Include info on the 2017, 2018, and 2019 Stanford Community Symposia on ME/CFS and the 2019 NIH Accelerating Research conference. And the current NIH study. Include papers on ME/CFS from the past 8 years by these authors (Google their names and ME/CFS And they should pop right up):
   • Robert Naviaux - cell danger response and Metabolomics of ME/CFS
   • Christopher Armstrong
   • Neil McGregor
   • Jonas Bergquist
   • Fluge and Mella
   • Mars and Morris
   • Bhupesh Prusty
   • Jarred Younger
   • Maureen Hansen
   • Ian Lipkin
   • Mady Hornig
   • Nancy Klimas
4. Educate yourself on tests and treatments others are using, either reading or talking to patients here or on MEpedia or printing out the 2012 ICC Clinician's Primer on ME/CFS or Martin Lerner's Treatment Guide and Kent Holtorf's Treatment of CFS document, attached.

 

[Cher Noreen]

Omg, how well you've organized this is brilliant. It's almost like you've figured out how you communicate instructions to people with CFS/ME!

I can't do naturopaths. Not even the Bastyr trained ones. I went to one for a couple years before I got sick and he did amazing things for some muscle spasms I was having. But I really struggled with taking the supplements and compounds because of the lack of research and testing. I know they're actually trained really well and Bastyr encourages research, but I just have this niggling doubt every time they tell me to take something that it's a waste of my money.

But the UW and resource binder suggestions are brilliant. Thank you!

Btw - you're a trained nutritionist? Do you work privately? That's a resource that I've been planning to find for my household - I'm not the only disability here. But I don't know if I need a nutritionist, dietician, or chef because we have to make sure were getting all our nutrients, but my sister has CP so the consistency of food has to be really specific for her to manage it. Now, if you're Bastyr trained I'll jump for joy, but even if not, and you are available to work privately, can you send me your info?

 

[Cher Noreen]

You could point her to some of these CME courses: https://www.meaction.net/cme-courses/

Or you could show her Workwell Foundations recommendations. Here is a page of their resources: https://workwellfoundation.org/resources/

I like this document. It's not a really long read and they also include sources at the end: https://workwellfoundation.org/wp-c...tic-Approach-to-Exercise-for-CFS-patients.pdf (Easy to give to a busy doctor however, read it first yourself to make sure it fits your goals with her.)

They also have some continuing education courses: https://workwellfoundation.org/resources/

Thank you! These are all excellent resources. I've actually been taking the Medscape CME courses to understand what they're teaching. I like them a lot.

But I don't know anything about how the medical community views the different orgs that offer CME. Or, since she works for a large health network (Providence) if it has a preference or prejudice in continuing education resources. So I've been hesitant to suggest a different CME course without some documentation or research showing why this class is better than that one.

I know that ultimately she can look at the research herself and decide, but I need to get her interested enough in the research to spend that time. Which, if the Medscape CME would be as respected by her community as the AAFP one is, I think I can do.

 

[LINE]

"After the 2015 wedding of friends, I have been mostly housebound. In the winter months I am mostly bedbound and zombie-like so I live for the summer months when I actually feel present again. "

Considering how you feel in summer, did they check your Vitamin D levels? Magnesium supplement?

 

[nerd]

The physicians I met always said that they don't have time for this. But they have time to discuss with me because they know everything best. They aren't even willing to diagnose it completely with all tests that are in the guidelines. I've given up on the medical system in Germany. I'll try to source the drugs directly from India.

 

[Cher Noreen]

Considering how you feel in summer, did they check your Vitamin D levels? Magnesium supplement?

Not my magnesium. We keep a watch on my vitamin d levels. I'll have to look into magnesium. Thank you!

The physicians I met always said that they don't have time for this. But they have time to discuss with me because they know everything best.

God that's depressing. But I've heard it too. I am so hoping she isn't one of those.

 

[Learner1]

Not my magnesium. We keep a watch on my vitamin d levels. I'll have to look into magnesium.

I can't do naturopaths. Not even the Bastyr trained ones. I went to one for a couple years before I got sick and he did amazing things for some muscle spasms I was having. But I really struggled with taking the supplements and compounds because of the lack of research and testing. I know they're actually trained really well and Bastyr encourages research, but I just have this niggling doubt every time they tell me to take something that it's a waste of my money.

I don't mean to be rude but, given your answers above, you do not seem to be applying whatever algorithm is in your head about taking supplements on an equal basis.

Why don't you have a niggling doubt about your vitamin D when your MD checks it and maybe tells you to take some? Or magnesium? Did you know that there are many forms of magnesium, including magnesium oxide, magnesium citrate, magnesium glycinate, magnesium malate, etc. It would be a miracle for most MDs to be able to properly advise you on which one to take, where a naturopathic doctor would be able to help you select one or more that fit your needs. A magnesium deficiency can be serious, and can even lead to one's heart stopping and death, so it's worth knowing about, and one wonders why, if it's so important, your MD hasn't been checking it, since over 70% of Americans don't get enough in their diet.

I found Bastyr when a family member had become extremely ill and had been to 21 doctors and on nine pretty heavy-duty medications, and wasn't getting better. Using an evidence-based approach, with the help of one of the top naturopaths there, this patient was able to get well after a 3-year illness, get off all of medications, and go on with their life

I prefer to do comprehensive nutritional testing, like Genova Diagnostics' Metabolomix+ test and see what the deficiencies and imbalances are, and work to correct the pathways that are impacted by giving them the ingredients that they need to do their job. The analogy I like to use is, if you're going to make an angel food cake, you're going to need a dozen eggs. And a certain amount of flour, sugar, and vanilla. If you only have four eggs you're either going to make a really bad cake or a really small cake, But it won't be a good one unless if you have all the ingredients. Same with our bodies.

It might interest you to know that there's been a fair amount of metabolomics research in ME/CFS which is found significant deficiencies in B vitamins, antioxidants, amino acids, and phospholipids. This varies from person to person, depending on the genetic and environmental factors that are contributing to our disease and depleting our resources. It seems to only make sense that a component of improving our status would be to provide our body with a biochemistry it needs to function properly.

While there are a couple of MDs I run into in the Seattle area that seem to be able to discuss nutrition, by and large they leave that to naturopathic doctors, who go through years of medical school and a residency after retaining all the very same sort of undergraduate work that MD students do. I don't take what they say at face value, I go home and research my abnormal test results, look at the recommendations that The doctor is making, ask the questions I need to feel comfortable, and then I proceed.

I have seen too many people get into trouble blindly following what their MD says. Most MDs see their patients for only 5 to 15 minutes at a time, it's impossible to deal with complex patients this way. The naturopathic doctors that I've seen in the Seattle area have taken my insurance and have spent as much as 45 to 60 minutes with me and greatly helped when I couldn't get an MD and the Seattle area to give me any kind of help for my ME/CFS, even trying at Seattle Cancer Care Alliance, Swedish Cancer Institute and University of Washington.

We each have our own choices to make, but Washington State is one of the most enlightened places in the country to get help. Perhaps you might want to broaden your criteria about how you choose people to help you, and get somebody qualified and work with them to solve your admittedly very complex issues.. this disease takes a team of doctors, so you will want to have both conventional as well as naturopathic doctors on your side. And if you can get them to all to respect each other and work together, so much the better.

Best wishes...

 

[PisForPerseverance]

Many options written for doctors from the me/cfs clinicians coalition:

https://mecfscliniciancoalition.org/clinical-management/

https://mecfscliniciancoalition.org/resources/

You're on the right track to getting the healthcare you need

 

[PisForPerseverance]

10 Ways to Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS) has a bunch of studies reference

Potential Dangers of Exercise or Activity for People with ME and Chronic Fatigue Syndrome

Understanding the historical context of the harms from graded exercise therapy. And the history of ME in general

IACFSME for Healthcare Professionals

 

[Learner1]

@PisForPerseverance Let's please not scare people away from exercising altogether. The issue is exercising above ones capability and not refeeding resources depleted by exercise.

Many of us can and do exercise. Many of us were originally athletes, and have lots of experience with training, and have found that doing small amounts of exercise as we're able to, particularly things like weightlifting, versus anything aerobic which is problematic, can be accomplished. This promotes BDNF in the brain, mitochondrial biogenesis, and many positive metabolic and biochemical changes, that can facilitate eventual resolution of our illness.

With ongoing treatment, perseverance, strategy, and careful execution, I've been able to golf 18 holes using a golf cart and walk as many as 9 miles in a single day on several occasions recently, taking it easy and feeding nutrients after each occasion. This is not reversed the gains I've made. At one point, I was able to do one weight exercise and then have a 10 minute nap on the floor, or be on a walk, and have a nap in the middle of a gravel trail, and worked my way up steadily from there. I've known others on this site who chop wood, bicycle, ski, and do other activities successfully.

Doing aerobic exercise is challenging for most of the patients I know, and it's something that practice doesn't seem to help too much. For me, it seems to be mitochondrial thing, and a problem with fatty acid oxidation, and burning through my muscle glycogen stores too quickly, but for others there may be different dynamics.

I found that taking glutathione or NAC and BCAAs during or afterwards is helpful, as is taking enough NAD+ or NMN, T3, and hydrocortisone to be in a "normal" state.

 

[Cher Noreen]

you do not seem to be applying whatever algorithm is in your head about taking supplements on an equal basis.

This is absolutely true, and I know it. I started going to an NP in 2005, after studying the philosophies and practices. I love the way it sounds. I used to live right by Bastyr. I had friends who went there for massage and nutrition. I knew the HR director. It is a great school with an excellent philosophy.

I went to an NP in Seattle who studied at Bastyr after his working as a Pharm.D for several years. After learning so much about medication, he was simply unhappy with allopathic medicine. I went to him for almost 2 years. And my insurance paid for it. I knew both him and his wife and they were good people.

But I was paying him several hundred dollars per month for medications. And even after a year I never noticed any relief in my symptoms. (I was having chronic tonsil infections and sinus infections).

But it was the fact that I was paying him for my medicine that I just ultimately couldn't get over. I don't like the prescriber and supplier to be the same person.

I've actually tried going to 2 different NP's since then. I was raised with parents who believe NP's are better than western medicine and who used western medicine for the basics and major normal things (surgery, etc) so I actually have a really difficult time navigating the medical world. I started because I learned about OMF and Ron Davis taking CFS seriously. And I knew that to get assistance I would need certain documentation from mds. (Though I still haven't applied for it yet.)

The last NP was a friend of my parents who tried to get me to agree to be treated for a wandering womb, but not to tell my parents about it. That was really my last bit of trust.

I know that western medicine has a ton of flaws and they miss some really important things. But that is where I feel most comfortable trusting my health. And ultimately, that's the choice each of us must make individually.

 

[Rufous McKinney]

But it was the fact that I was paying him for my medicine that I just ultimately couldn't get over. I don't like the prescriber and supplier to be the same person

I obtain custom chinese traditional herbs from an expert herbalist. so he diagnoses the conditions using their methods and we work on aspects of reducing symptoms.

And he maintains about 600 raw herbs and also has granular mixes he puts together.

thats how its done, there.

I never feel I'm being promised cures that don't deliver. Im not. being "sold something". I'm not told: if you dont come in for 30 acupuncture treatments, you can' t get well.

I notice improvements and appreciate them. Miserable symptoms are less awful. So they work really well.

He sees the people AFTER they get spit out of the naturalpaths across the street- who do all the nutrition and supplement pushing. Also major chelation here. Thats the only other advice I've ever received: get chelated.

Chinese medicine will also involve adjustments in food choices.

 

[PisForPerseverance]

Let's please not scare people away from exercising altogether. The issue is exercising above ones capability and not refeeding resources depleted by exercise.

What she asked for was help communicating with her doctor that the guidance her doctor was getting that GET is good for ME is wrong, has been discredited, and can make her worse. Because two of her doctors are recommending she exercise more than she currently is, and do cardio exercise. So I gave her links that contain guidelines for doctors, studies, and patient experiences on exercise and GET.

I don't think any of the studies or advice on those links encourages not exercising if and when it's withins one ability to do so without pem. I don't remember everything in those links and didn't read every reference so it's possible there's some pieces of advice referenced that say not to do any exercise point blank without finishing the sentence of "if you get pem afterwards" or "if you feel badly from things way less than exercise". But considering the authors and my recollection of those articles or article I think you're talking about, I think that they're probably clear about that each person is different.

For pacing, I believe the clinician coalition, if not those other links as well, had good links to pacing guidelines. I think you mentioned having guidelines from workwell already @Cher Noreen, and looks like someone posted some that has exercise guidelines. Do you already have some sources of pacing guidance in general? If whatever's been posted doesn't have as much comprehensive pacing guidelines as you'd like then dig around for more. I believe what's sorely needed is comprehensive, thorough, and individualized pacing guidance help, but for now we have to make do with learning tips and guidelines from different non personalized sources. And using hrv and hr moniters if possible for our individual experience, but even that I think we really need personalized help with to be most effective.

I think how to manage heart disease in the context of limited ability to exercise is definitely something to continue looking into. I wonder if you can find anything by looking up heart disease on any ME organizations or websites, or reaching out to them, particularly those with doctors as members, like the clinician coalition? Better even would be both your doctors also reaching out to an organization with doctor members and asking about heart disease. I'd be interested in what you or they find out.

The issue of aerobic exercise in those with ME and heart disease sounds like a troublesome thing to have to deal with and I'm sorry you can't just do this thing that would otherwise be helpful. Perhaps pacing with tiny tiny bits of aerobic exercise is possible for you right now, or perhaps not. Being mostly bedbound in the winter and mostly housebound otherwise doesn't sound like aerobic exercise is possible without pem right now, is that your experience? What kind of exercise do you do? You said your doctors want you to do more than you're doing. Experimenting with supplements learned from this site, and/or meds, is one way to go in the short term to see if you can raise your ability for exertion without pem, to see if you can get that heart benefit. Hopefully you'll get some successful treatments yourself or from your docs and your health will improve generally, allowing maybe more aerobic in the future.

Your post was really informative though @Learner1. It's good to hear about your range of experiences and how you've personally improved. Would you say that it's important that it has been in the context of treating your illnesses in general and having a fair amount of improvement overall from fruitful medical care, from what you've said? Would you say that strategy and nutritional management wouldn't have worked much without the overall treatment?

I found that taking glutathione or NAC and BCAAs during or afterwards is helpful, as is taking enough NAD+ or NMN, T3, and hydrocortisone to be in a "normal" state.

Do you mean these things help you with aerobic exercise as well? Besides for your overall treatment, are there threads on the site where you talk about what strategies and careful execution you have used in exercise? Particularly non nutritional strategies because I can easily find those of people's including yours on the site. Thanks!

Many of us can and do exercise. Many of us were originally athletes, and have lots of experience with training, and have found that doing small amounts of exercise as we're able to, particularly things like weightlifting, versus anything aerobic which is problematic, can be accomplished.

I'm not sure if it's true to say that many of us can and do exercise or that many were athletes. I'd say 'some' wouldn't you? I don't think 'most' fits with what's estimated to be a distribution in illness severity, or that many people with diagnosed ME report doing things like lifting weights. I don't think there's enough known of actual illness prevalence or distribution of severity but that's what I infer from the percentage estimated to be housebound, and from my own limited impressions of people with ME. It's not a straightforward question to find out since there'd be many factors at play. Like lack of awareness and underdiagnosing in general, missing milder cases, not knowing how to pace around exertion which would probably allow for some more exercise for some, not knowing how to strengthen or having any background in it, most people being women it being less common to have experience in strengthening. I'm calling it strengething because you said weightlifting and training, I don't know what different athletic training entails or the kinds of things you're thinking of. Would you agree with the 'some'?

Research on aerobic and anaerobic, people's personal experiences, tips, are things I'd like to learn more about. I'm taking a break from PT right now due to a health decline and cannot do any strengthening right now, but strengthening to stabilize my joints is one of the major avenues to manage EDS throughout the rest of my life. So optimizing my ability to strengthen is important to me. I was also a hardcore competitive athlete as a kid and always bouncing around and tumbling everywhere, being a gymnast. Bouncing around again whether on trampolines or doing aerobic dancing is important to me, so I'll keep my hope that I'll be able to. Hopefully research will reveal more.

 

[Learner1]

Your post was really informative though @Learner1. It's good to hear about your range of experiences and how you've personally improved. Would you say that it's important that it has been in the context of treating your illnesses in general and having a fair amount of improvement overall from fruitful medical care, from what you've said? Would you say that strategy and nutritional management wouldn't have worked much without the overall treatment?

I've used Kent Holtorf's, Treatment of CFS strategy, which includes treating hormones, sleep, nutrition, mitochondrial dysfunction, toxicity, infections, autoimmunity, and hypercoagulation to try to normalize my body function as much as possible, along with a high quality diet and as much exercise as I could do at any point in time without overdoing it. The more I've worked each of these angles, the more I've improved. The nutrition is a part of overall treatment.

Do you mean these things help you with aerobic exercise as well? Besides for your overall treatment, are there threads on the site where you talk about what strategies and careful execution you have used in exercise? Particularly non nutritional strategies because I can easily find those of people's including yours on the site. Thanks!

I discussed various treatments and many threads here. Antivirals, antibiotics, immunoglobulins, MCAS meds, POTS meds, hormones, and immunomodulatory have helped, as has hyperbaric oxygen. But, exercise promotes mitochondrial biogenesis and recycling as well as brain derived neurotropic factor, and produces many positive metabolic changes at work and synergy with nutritional strategies.

I'm not sure if it's true to say that many of us can and do exercise or that many were athletes. I'd say 'some' wouldn't you? I don't think 'most' fits with what's estimated to be a distribution in illness severity, or that many people with diagnosed ME report doing things like lifting weights. I don't think there's enough known of actual illness prevalence or distribution of severity but that's what I infer from the percentage estimated to be housebound, and from my own limited impressions of people with ME. It's not a straightforward question to find out since there'd be many factors at play. Like lack of awareness and underdiagnosing in general, missing milder cases, not knowing how to pace around exertion which would probably allow for some more exercise for some, not knowing how to strengthen or having any background in it, most people being women it being less common to have experience in strengthening. I'm calling it strengething because you said weightlifting and training, I don't know what different athletic training entails or the kinds of things you're thinking of. Would you agree with the 'some'?

The dictionary definition of many I was using is:

Many - a large but indefinite number

I also looked up some, which is defined as an unspecified number. So, they are similar. It's impossible to know an exact number.

But, I've met ex-runners, swimmers, rowers, horseback riders, soccer players, cyclists, and bodybuilders on this journey who have ME/CFS, both women and men. Most of this group who I've discussed exercise with have interestingly shared that they can lift weights, both women and men, but have a more difficult time with aerobic exercise. And, we found that our experience as athletes, with training, nutrition, and injury rehabilitation has been helpful as we tackle the challenges of exercising with ME/CFS.

Please understand I am no way saying that those who I know who are exercising are not training all out everyday. We have good days and bad days, we continue to experience PEM, even though it may I have a higher threshold and lower frequency.

But, my personal experience has been, even with sustained practice in a group setting with other patients, I have not been able to increase my aerobic capacity, even though I have improved my overall fitness and exercise capacity. There seem to be some medical reasons for this.

Research on aerobic and anaerobic, people's personal experiences, tips, are things I'd like to learn more about. I'm taking a break from PT right now due to a health decline and cannot do any strengthening right now, but strengthening to stabilize my joints is one of the major avenues to manage EDS throughout the rest of my life. So optimizing my ability to strengthen is important to me. I was also a hardcore competitive athlete as a kid and always bouncing around and tumbling everywhere, being a gymnast. Bouncing around again whether on trampolines or doing aerobic dancing is important to me, so I'll keep my hope that I'll be able to. Hopefully research will reveal more.

I think I've drawn from my experience as a swim instructor, even more years lifting weights, and my years as a competitive swimmer, synchronized swimmer, and water polo player the most.

From teaching swimming and weight lifting, I learned to break movement into components to master and small amounts and then put together in larger groupings to be part of a whole, with patience, over time. The rhythm of a sports season, with increasing training, tapering, with weeks on and weeks off and days on and days off, has also been helpful.

And, just knowing my body and capacity for exercise. I used to be able to tell what my heart rate was and perceived exertion was very helpful in guiding my training. With weightlifting, one can see the numbers and count repetitions and sets and set goals accordingly. On a cardio machine, one can set goals with heart rate, time, or exertion. And with just walking, which is what I do the most of, one can set time, distance, rest periods, and changes in elevation.

Being in touch with one where one's body is and what one is capable of on any given day It's quite helpful, and then one can set what I consider "soft" goals, things that are probably attainable given the situation that day, and then seeing if one can actually meet it or achieve it. I tend to set goals at about 85% of what I think I can do, and sometimes I can't do it all at once, but have to break it into two or three or six or 10 exercise sessions.

Being strategic about feeding nutrients to support this is important, and then, I don't feel a Fitbit is very productive, or setting conventional exercise goals by day or week or a month. My energy just varies too much. I use an Oura ring that tracks my sleep quality, my pulse, my heart rate variability, and scores my readiness to exercise and sets an overall exercise goal for me, which varies greatly from day to day depending on where I am in my treatment cycle, how much sleep I've gotten, how ill I am, etc. And on my crappy days, I try to meet the lower goal, but don't beat myself up if I can't achieve it, and on my good days I try to always exceed the higher goal. And then I watch my performance on a monthly basis to track how I'm doing in general.

With weightlifting, it's easy to set goals for amount of weight, reps and sets, where I used to do 3 setts always, these days if I could do two, that's fine, and I started with doing two or three exercises and now can do 8 to 12.

Things that require bursts of energy, or aerobic function, just don't work. I get a drained feeling in my forearms and legs, my head feels sleepy, and I want to curl up on the floor and take a nap. So, I walk, and if I'm doing something like squats or rowing, I make sure I rest a lot. Swimming is almost impossible, which is unfortunate for me, but kayaking is more doable.

Hope this helps.

 

[Learner1]

This is absolutely true, and I know it. I started going to an NP in 2005, after studying the philosophies and practices. I love the way it sounds. I used to live right by Bastyr. I had friends who went there for massage and nutrition. I knew the HR director. It is a great school with an excellent philosophy.

I went to an NP in Seattle who studied at Bastyr after his working as a Pharm.D for several years. After learning so much about medication, he was simply unhappy with allopathic medicine. I went to him for almost 2 years. And my insurance paid for it. I knew both him and his wife and they were good people.

But I was paying him several hundred dollars per month for medications. And even after a year I never noticed any relief in my symptoms. (I was having chronic tonsil infections and sinus infections).

But it was the fact that I was paying him for my medicine that I just ultimately couldn't get over. I don't like the prescriber and supplier to be the same person.

I've actually tried going to 2 different NP's since then. I was raised with parents who believe NP's are better than western medicine and who used western medicine for the basics and major normal things (surgery, etc) so I actually have a really difficult time navigating the medical world. I started because I learned about OMF and Ron Davis taking CFS seriously. And I knew that to get assistance I would need certain documentation from mds. (Though I still haven't applied for it yet.)

The last NP was a friend of my parents who tried to get me to agree to be treated for a wandering womb, but not to tell my parents about it. That was really my last bit of trust.

I know that western medicine has a ton of flaws and they miss some really important things. But that is where I feel most comfortable trusting my health. And ultimately, that's the choice each of us must make individually.

Given the complexity of this illness, there's no one practitioner is going to fix all one's problems. The best situation is to have a multidisciplinary team of doctors of different types, including people with immunology and infectious disease expertise, neurology - particularly a dysautonomia specialist, and a naturopathic/functional medicine doctor. I've seen endocrinologists, but they've been virtually useless, the naturopaths have run circles around the endocrinologists and managing my endocrine problems, I most of the MDs didn't know anything about nutrition beyond running a vitamin D or B12 test, and that's simply not enough.

 

[max_yazhbin]

It sounds like you got a bunch of good advice such as educational materials for your healthcare helper, here is mine: you are the one who will have to live with the advice you take, thus treat any healthcare helper as someone isn't going to have to suffer the direct consequences of the advice or experience the direct benefit of said advice. Also consider, what is the best option for you, is it trying to education someone or could you do better by finding someone else, perhaps someone you don't physically have to see? Do you need only one person or could there be multiple people who, ideally, will coordinate with one another?

 

[Rufous McKinney]

The last NP was a friend of my parents who tried to get me to agree to be treated for a wandering womb, but not to tell my parents about it. That was really my last bit of trust.

I had never heard of this wandering womb. Read up on that: WOW, really?

So then I read this abstract that is rather mindblowing- about oxytocin, endometriosis and bipolar disorder.

https://pubmed.ncbi.nlm.nih.gov/28919554/

 

[Cher Noreen]

I had never heard of this wandering womb. Read up on that: WOW, really?

So then I read this abstract that is rather mindblowing- about oxytocin, endometriosis and bipolar disorder.

https://pubmed.ncbi.nlm.nih.gov/28919554/

Yeah. And his treatment was going to include "manual repositioning of my cervix," which he would do. With his hands. It would by necessity involve multiple visits as it would take time for the womb to settle in to the new spot.

Basically, this guy was asking me to let him sexually assault me, repeatedly, to cure a physical anomaly that isn't there, in order to treat my "hormonal" problems.

So, yeah, I have big trust issues with doctors trying to treat me for anything that isn't widely accepted by the medical profession as a real problem. I do try check in on some things that are non-standard, but if I can't see solid science behind it, I'm not doing it. And any professional who tells me to do something new without research & good evidence gets put on my question mark category.

That's actually why I want to stay with this doctor. She wants the science, too.

I've read that abstract. It's an ingesting concept that could use more research. There is so little attention given to uterine issues. But I've actually been checked w/ultrasound to see if I have any "wandering uterine cells". By women. In a hospital. Nope. My womb is exactly where it's supposed to be and not growing tentacles.