Highlights From the Talk
Dr De Meirleir believes metabolic dysfunction plays a key role in the pain found in ME/CFS.
In this fifth video of ME/CFS Associations ‘Expert Science’ series, Dr .De Meirleir looked at why he believes pain is so common in ME/CFS and what can be done about it.
He noted that fatigue usually comes before pain in this disorder and as with sleep cites the cytokines as major players in symptom production but this time he points to IL-1, a proven pain inducer in animal and human studies.
De Meirleir has been increasingly focused on the gut. Instead of the viruses we hear so much about, De Meirleir tagged bacteria and, in particular, the bacteria in our guts, and the neurotoxins they produce as major factors in pain production. How does he know this? First hand experience; antibiotic use (probably Xafaxin) results in less pain in some of his patients.
- Dig Deeper: Xafaxan – Gut Rebalancer
The gas nitric oxide also contributes to pain and reducing nitric oxide levels has resulted in less pain in some of his patients.
Problems with our endogenous opiate receptors; ie those receptors found in the brain, spinal cord and gut that respond to opioid drugs, also play a role. (Studies indicate that ‘filled’ opioid receptors in many fibromyalgia patients prevent them from responding to opioids.) De Meirleir mentioned, encouragingly that an English group is working on altering opioid receptor activity to reduce pain.
Lactic Acid
Levels of lactic acid high enough to suggest ME/CFS patients have been running a marathon, are not uncommon in his patients. (Lactic acid study results, unfortunately, have been inconsistent but Staci Stevens work (pers. Communication) indicates a subset of high lactic acid producers is present.) It’s not just the muscles, though; low oxygen levels in the gut have made a home for anerobic loving bacteria (there’s that low oxygen again) to produce high levels of lactic acid in the gut as well.
Whacky Blood Circulation and Autonomic Nervous System Dysfunction at the Heart of the Problem
Metabolic dysfunctions caused by poor oxygen deliver to the tissues and organs and by mitochondrial problems are the biggest factor in creating pain in De Meirleir’s book.
Unfortunately, the biggest part of the pain process in ME/CFS is also the most difficult to treat; artificial means (supplemental oxygen?) can be applied but altered sympathetic nervous system (SNS) activity that expands the large blood vessels also shuts down the small blood vessels, resulting in, he believes, a chronic oxygen shortage not only in many organs but also in the peripheral (ie body) nerves.
This strange blood flow pattern, the big blood vessels getting too much blood, and the small ones getting too little, he believes, is at the heart of both the metabolic and nerve pain ME/CFS patients suffer from.
Dr. DeMeirleir did not talk about pacing but given the metabolic issues present it and exercise are clearly critical elements of any treatment plan. De Meirleir has examined the pain/exercise interaction before.
He was one of the first researchers to find reduced exercise capacity in ME/CFS and developed easy way of predicting VO2 max using peak oxygen uptake. He proposed immune dysfunctions and nitric oxide played key roles in limiting exercise in 2005. ‘Catastrophizing’ was associated with reduced activity and body pain and was explained at least somewhat by increased pain and oxidative stress levels after exercise in another. The authors suggested rigorous pacing (and pain neurophysiology education (?)), which brings us to a story…
Interlude – Living Within Your Metabolic Limits
I just got off the phone with someone with ME/CFS who’d received some surprising exercise test results at the Pacific Fatigue Lab in Stockton, California. Labeled an overachiever, she was rather shocked to learn that her body went into anerobic energy metabolism at a mere 100 heartbeats per minute, something she could easily achieve by loading the dishwasher or climbing the stairs.
QUICK HITS
- A quirky metabolism is the biggest pain producer in ME/CFS
- Sympathetic nervous system problems restrict blood flows to the small blood vessels causing oxygen debt in the tissues
- Low oxygen conditions in the gut can also allow anaerobic bacteria to produce neurotoxins
- Lactic acid accumulations in the muscles and the gut can also contribute
- Nitric oxide reducers, probiotics, gut antibiotics and pacing can all help
Not wanting to become deconditioned and subject to the health issues that problem causes she’d always preferred to exercise every now and then and suffer the consequences for, what she thought was, the greater good. Her test results suggested she was hammering her system pretty hard by doing that and her exercise protocol, developed by Staci Stevens required her to do less… much less.
After 4 weeks of keeping within her metabolic limits, she reported she was feeling better than she had in years; she had more energy, she was calmer and less irritable, her gut problems had vanished and her quality of life was much improved.
All it took was keeping her heart beat under 100 beats per minute and taking needed breaks. (Breaks are necessary even when keeping the heart rate below 100).
Treatments
So what do we have here to reduce pain? Not opioids but pacing, rebalancing the gut flora and nitric oxide reducers.
- Pacing (not explicitly mentioned)
- Certain antibiotics (probably Xafaxin) – to reduce the anerobic flora producing lactic acid
- Probiotics – to do the same
- Nitric oxide reducers
Not Part of the Package
Interestingly, despite the metabolic dysfunction and mitochondrial problems involved, Dr. DeMeirleir did not suggest mitochondrial energy enhancers (COQ10, D-Ribose, NAC, methylation protocol) or antioxidants, or given the blood circulation issues, drugs that effect sympathetic nervous system functioning or blood volume enhancers. De Meirleir’s early interest in neurotransmitters and exercise (he’s an exercise physiologist by training) did not lead him to suggest ways to effect neurotransmitter levels. Nor did he mention pain neurophysiology or pacing (heart rate monitor use?) or ways to avoid catastrophizing or depression which his latest study (he was the senior author) suggests does contribute to, even if it doesn’t cause, pain in ME/CFS.
Check out past talks on
Cort,
Thank you for a ST Patrick’s Day’s lift. Dr. De Meileir layed out the best understanding of the pain that I live with everyday. Mitochondrial and metabolic pain hit the nail on the head for me. I am one of the many whose greatest difficulty living with this spectrum illness is the PAIN.
Getting proper pain management with ME/CFS is nearly impossible. In my opinion 99% of all Doctors and pain specialists do not believe in ME/CFS nor understand it’s consequences. We live in an era of Big Pharma, and big money is being made selling their legal pain killers illegally on the streets.
The feds are breathing down the Doctors backs and they have so patients seeking these drugs from their Doctors that it is a circus.
ME/CFS patients sure do look and act funny so all they want to do is give us anti depressants.
Cort, thank you so much for providing us all with this excellent reporting and Dr. De Meirleir’s video. Watching this video gave me hope. He nails the concepts of pain in this illness. I can’t wait to share this with my ME CFS specialist.
Thanks Michael,
The idea of the pain in ME/CFS being associated with metabolic problems really resonates with me since after I exercise pain is one of my biggest issues. I getting burning muscle sensations all over my body. Sometimes the same thing happens with stress although its much more evident after exercise. I don’t know if it’s lactic acid, nerve pain or what but its often most prevalent the next day….
Hi Cort,
Great write-up and video.
Note: if you look up the gut antibiotic, it is spelled xifaxan (rifaxamin) not xafaxin. And pacing, yes he does advise patients to stay within their energy envelope, but he discusses this on a one to one basis with individual patients as we are all so different.
He also gives a very individualized protocol based on symptoms and lab testing. Protocols usually include different medications and supplements (other than antibiotics, probiotics, and nitric oxide reducers).
Sushi
Thanks…I keep getting Xafaxan wrong…Thanks for the heads up and the insight into his approach.
In my case, I had a toxic chemical inhalation injury at work. Methyl mercaptan, hydrogen sulfide, turpentine, dimethyl sulfate, etc. The chemicals do affect mitochondrial respiration. The R-S-H chemicals can easily get past the lung into the blood, flipping across via the S-H bond. Yves Alarie, who studied the victims of the Bhopal incident, explained this process and how it can affect the whole body, not just the lungs. A dental research team led by Paul Johnson at UCSF showed the effect of methyl mercaptan and hydrogen sulfide in human gum tissue. “Effect of Methyl mercaptan on synthesis and degradation of collagen”, J. Periodon. Res. 1996: 31: 323-329. It “can inhibit DNA and protein synthesis. I lost 60 percent of my mandible after the accident. Parts of my brain are hypoxic. I went through a lot. The fatigue was painful and profound and was instantaneous. I thought that with time, the burning muscle fatigue would go away. It did not. I also became very sensitive to medications that had sulfur and that would flare the pain. A team of doctors in southern CA who were familiar with treating people exposed to sulfur chemicals on the oil rigs, felt I would benefit from hyperbaric oxygen. To make a long story short, I went through 60 high pressure treatments to stop jaw infections that were unresponsive to surgeries and antibiotic, and the infections stopped, and the brain fog lifted, and the severe muscle pain was improved. Gradually the muscle pain returned over the next few months and a trial with 20 mild HBO was tried. It helps a lot. Every few months I returned for a series. I now have a low pressure portable unit at home. One doctor explained that once the series of treatments starts, they must be given daily to cause new capillaries to develop. In my case, they believed my brain had idling neurons and if a blood supply was given, they would fire.
So in what happened to me, I can see how mitochondria, capillaries, oxygen, play some role, and the chemicals I was exposed to impaired the cells ability to function. Some of the Gulf War Syndrome vets have similar symptoms. I suspect some chemicals can affect DNA and RNA, so the defective cells reproduce. I am not cured, but I am able to get relief of the pain and brain fog with the mild HBO series.
What a story Pat! It sounds like it was all about hypoxia and oxygen deprivation due to the toxic exposure…and how interesting how well it fits with De Meirleirs view of what has happened. Thanks for sharing it.
Another great article thanks Cort, and in a way one can understand. Just feel KDM has the best understanding of all the mechanisms involved now – he really is bringing the jigsaw together.
Cort, as always, this is really interesting stuff, and potentially useful. I just wish the average doctor was reading/listening to this. I’ve been in pain so long I don’t remember what it’s like to live without it, but I can’t get any meaningful help from any MD, either gp or specialist. At best, they tell me to take Aleve or Advil, at worst, they treat me like a junkie. The rheumatologist I used to go to told me I was engaging in “classic drug seeking behavior” and said he’d no longer treat me. And reported it to my insurance co., leading to an “audit” of my prescription coverage: translation: no pain meds. Any time I’ve tried to engage a doctor about treatment options I’ve learned about, they treat me like a hypochondriac or ignore it. Why isn’t this info tricking down to clinicians?
Good article Cort, thank you for sharing this.
I also have extreme difficulty with CFS pain as well as pem.
And for fun I also have hyperadrenergic pots tossed into the mix.
Am starting Cardio Rehab at my local hospital in 10 days, and they start by doing an assessment as ordered by the cardiologist, and go from there.
That’s all well and good, and I welcome the challenge. But because I also have CFS, this is going to be a challenge.
Here’s an amazing article I found while researching CFS pem. Think it explains how to stay in the ‘energy envelope’ better than anything I’ve read thus far. Love this article. Plan on printing it out and giving it to the cardio rehab physical therapists and let them ‘do the math.’
Here’s the article. Think it’s brilliant. Have been meaning to post it on PR, and plan to do so this coming week.
http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
Quoting Cort, Pasting below:
I getting burning muscle sensations all over my body. Sometimes the same thing happens with stress although its much more evident after exercise. I don’t know if it’s lactic acid, nerve pain or what but its often most prevalent the next day…
Cort, I think it is lactic acid. Dr. Klimas told me this is a huge factor is pem. She recommends 5 minutes exercising and 5 minutes resting. She’s very knowledgable about pem and keen on exercise, so rather than listening to my comment that she gave me specifically, I’d recommend Googling and listening to her speak on the subject and follow her guidelines. There is a series of videos online that she’s made on this subject.
Best,
Questus
Many people with ME don’t have so much pain. Another subgroep? People who have pain as main symptom i think have FM or both.
In my opinion, both FM and ME, along with CFS are all meaningless terms. You ‘hurt’, you are ‘tired’, you are ‘muddled ‘, ‘etc’….that is not science. And these names, FM, CFS, ME, describe symptoms…not disease process. ie what is happening at a cellular level. So in my world much discussion of FM vs CFS is moot.Like contrasting a headache to vomiting: both can symptoms of ONE disease process.
Yeah, intractable pain, I’ve got it. And no good remedy. Most docs use the tool called ‘blame the victim’.
Opinion
The Gender Gap in Pain
By LAURIE EDWARDS
Published: March 16, 2013
http://www.nytimes.com/2013/03/17/opinion/sunday/women-and-the-treatment-of-pain.html?smid=pl-share
Worth looking at Dr. Les Simpson’s book Ramsay’s Disease which shows how some our red blood cells can deform, so can’t pass through the smallest capiliaries. This can only be seen if the blood is fixed as soon as it is taken. It makes sense why I am sometimes breathless with little activity and at other times can do much more.
Dr. Simpson suggests nutritional intervention here.
http://www.amazon.co.uk/Ramsays-Disease-Encephalomyelitis-Unfortunate-ebook/dp/B00875TLB4/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1357366114&sr=1-1#reader_B00875TLB4
Ramsay’s Disease – Myalgic Encephalomyelitis … (Kindle Edition)
by Leslie O. Simpson PhD, Nancy Blake BA CQSW
I think the correlation of our gut and pain is significant. I too deal with high pain levels currently treated with opiods, but these drugs have many side effects, especially a slowing metabolism.
Before being diagnosed in 2009, I had been suffering the effects of CFS and FM for 5 years, but not knowing why.
I tried everything, like so many of us do, but one worked remarkably well. I detoxed myself with an ayuervidic treatment called Panchakarma. This primarily focused on ridding the body of toxins in the gut. After 10 days, I felt pretty good. The problem with detox though is that we retox, so panchakarma is of only temporary help.
I am sure there are many, including myself that would gladly take a temporary reprieve from the relentless symptoms of CFS and FM. After being first on Valcyte and then Ampligen for several years, it is time to detox again. 10 days at the Chopra Center, but this time, I will understand why cleansing the gut helps in pain management.
it is time to detox again. 10 days at the Chopra Center, but this time, I will understand why cleansing the gut helps in pain management.
Good luck Asok – please let us know how it goes 🙂