Orthostatic Intolerance, Pain and the Mitochondria in Chronic Fatigue Syndrome: Dr. Newton Talks
Highlights from Dr. Newton’s Video on Blood Flow
“I would suggest that abnormalities of the autonomic nervous system are the underpinning phenomena that explain most if not all of the symptoms that people with ME experience.” Dr. Julia Newton
Dr. Julia Newton started off a section on orthostatic intolerance(OI) stating that 90% of patients with ME/CFS experience dizziness or lightheadedness. She diagnoses OI using a symptom questionnaire (Orthostatic Grading Scale >4 = OI).
If you experience OI the first thing she suggests you do is to increase your fluid intake (2 ½ liters of water) and reduce your caffeine intake to no more than five cups of coffee a day (five cups!).
Increased fluid intake is always recommended for OI and indeed for ME/CFS, but increasing my water intake without salt leaves me feeling sapped and heading to the bathroom constantly. Dr. Newton noted that people with normal blood pressure when sitting should increase their salt intake. Dr. Rowe uniformly tells people with ME/CFS to increase their salt intake as they increase their fluid intake.
My experience with coffee is also different; coffee is like a drug for me. Small amounts of it usually send me flying. But I pay for that later with jittery feelings, gut cramping and crashing, and then feeling exhausted the next day. There are indeed many different kinds of ME/CFS.
Compression stockings can do wonders for the right person, and Dr. Newton recommended Duramed grade twos to prevent blood from pooling in the legs when standing. (We would appreciate reviews of other compression stockings that other people have found helpful.)
One very different tool Dr. Newton uses is tilt training. We’ve talked about ‘system resets’ before, and that’s what tilt training attempts to do. This simple and safe technique simply consists of people standing tilted against a wall for up to thirty minutes twice a day for six weeks. If it works for you, it will reset your autonomic nervous system, reducing your OI symptoms.
Another type of exercise that works for some POTS patients involves recumbent exercises. Doing exercises on the floor allows the body to more easily get the blood to the muscles without the problem of getting blood flow to the brain when we stand.
A short-term exercise program relying entirely on recumbent exercises (recumbent bike, rowing, or swimming) in its early phases also was able to produce a system reset in people with POTS (with or without ME/CFS?). Doing recumbent exercises first allowed the group to later graduate to upright exercise and weightlifting (as much as 5-6 hours a week). The participants also increased their salt intake and slept with the heads of their beds elevated. This short-term exercise program lowered their standing heart rates, reduced their renin levels and sympathetic nervous system activity, and increased their quality of life. It was more effective than the beta blocker propranolol.
Looking at her ongoing muscle cell studies Dr. Newton suggested increased levels of oxidative stress (oxygen free radicals) might be linked to increased acid levels in the muscles.
Energy production is at a premium in muscles when they are called on to exercise and oxidative stress – a natural byproduct of energy production and exercise – will result. Our cells and our bodies are well adapted to deal with the normal amounts of oxidative stress produced during exercise, but damaged mitochondria could pump out enough free radicals to overwhelm our antioxidant systems.
It’s not just the muscles either. Shungu found high lactate and reduced antioxidant levels in the brains of people with ME/CFS. Shungu attributes his lactate findings in the brain to the same factors Newton is questioning in the muscles: either the mitochondria have gotten whacked or low oxygen levels (hypoxia) due to reduced blood flow are present. An early entry into and reliance upon anaerobic energy production (the repeat exercise findings in ME/CFS) could also play a role. While mitochondria issues are possible, Shungu is definitely leaning toward reduced oxygenation pursuant to low blood flow to explain his lactate findings. It good to see different group leaning to the same conclusions.
If Dr. Newton finds that oxidative stress caused by damaged mitochondria contributes to the high muscle acid levels found, similar problems could be occurring in the brains of ME/CFS patients. That would definitely be a ‘big-picture’ finding.
A Pain Disorder
Dr. Newton went back to blood flow to explain one of the most debilitating symptoms she finds in ME/CFS patients – pain. She noted that if you don’t get enough blood to your brain when you stand, you get dizzy. But getting too little blood to your muscles causes fatigue and pain.
The big muscles – across the shoulder or the pelvic girdle- are most affected in ME/CFS. This kind of pain, called coathanger pain, is probably caused by low blood flow and, as we saw in the last blog, accumulation of acid in the muscles.
Reduced micro-blood flows are present in Trapezius Myalgia, a disorder affecting the same muscles, and which has a similar autonomic nervous system signature to that found in FM and ME/CFS. In FM over-activation of the sympathetic nervous system also appears to trigger contractions of the trapezius muscle during mental stress causing upper body pain. Both these findings agree with the ANS problems Dr. Newton is finding in ME/CFS.
- Cause of Upper Body Pain in Fibromyalgia (and ME/CFS?) Identified? Plus: ‘Trapezius Myalgia’ – Another Sister Disorder Identified?
Dr. Newton noted that gabapentin and pain killers can help, but what she’s really excited about is her muscle cell studies suggesting the acid accumulations may be reversible. Action for ME is funding further studies to attempt to tease out which pathways are involved, with the hope of finding drugs to reverse the process.
Given the widespread problems cellular acidosis can cause, this exciting project could have major applications for FM and possibly other pain and fatigue disorders. In that vein let’s reflect on a blog by Marco which reviewed a finding suggesting – to the investigator’s surprise – that post-chemotherapy pain appears to be caused by mitochondrial issues.
The Gut and the Autonomic Nervous System
Dr. Newton recommended eating smaller, lower carbohydrate meals to prevent large blood flow to the gut from depriving your brain of blood. The ANS also appears to be heavily involved in irritable bowel syndrome.
The low blood flows, sympathetic nervous system, mitochondrial and oxidative stress issues that Dr. Newton finds in ME/CFS suggest that researchers in a variety of disorders are hovering around similar issues. This is a good sign for the future.
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