ME/CFS Treatment Options Pt. 1 with Dr. Nancy Klimas – by Dan Moricoli
How nice it is to have a professional cameraman committed to helping out ME/CFS in southern Florida. Dan Moricoli, a recovered person with ME/CFS, and the creator of the ME/CFS Community and CFS Knowledge Center, has done many videos on ME/CFS over the years including these three with Nancy Klimas on treatment, one which is new this year.
They are mostly basic videos, but as always with Dr. Klimas, they come with some interesting insights. Dr. Klimas, after all, has been treating people with ME/CFS for over 30 years.
Cautioning that no two patients are the same, Dr. Nancy Klimas nevertheless dug into some basic treatment options on sleep, cognition, nutrition, exercise and coping for people with ME/CFS and surely fibromyalgia as well.
It’s no surprise that Dr. Klimas started off with sleep – the first symptom many doctors try to get under control.
Sleep Apnea Prevalence Way Up in Chronic Fatigue Syndrome (ME/CFS)
Dr. Klimas noted that most people with ME/CFS have non-restorative sleep, which derives from a lack of slow-wave sleep that takes place during the deepest sleep stages. That wasn’t a surprise. The surprise was how frequently Dr. Klimas is finding another sleep condition – sleep apnea – in her patient population. A whopping 40-60% of her patients who end up visiting a sleep clinic have at least some element of sleep apnea. (Since patients with more severe sleep problems are more likely to visit a sleep clinic, that 40-60% is skewed upwards, but since only 3-8% of the adult population has sleep apnea, the prevalence of sleep apnea still appears to be rather dramatically enhanced in people with ME/CFS.
(One wonders why. The risk factors: excess weight, narrowed airways, high blood pressure (hypertension), chronic nasal congestion, smoking, diabetes, family history and male gender do fit some patients (narrowed airways?), but in general aren’t a good match for ME/CFS. Gender, in particular, stands out. Sleep apnea is most common in overweight men over 40 – hardly a group that’s associated with ME/CFS. (The frequency of obstructive sleep apnea does, however, increase in women after menopause.)
Sleep apnea presents a dilemma for physicians since giving a drug that plunges someone into a deeper sleep state could make the apnea worse and more dangerous. Visiting a sleep clinic isn’t always necessary. Wearing a pulse oximeter which measures oxygen saturation overnight can do the trick.
- (Smartphones can help diagnose sleep apnea as well: How to use your smartphone to detect sleep apnea)
Stealing Deep Sleep From People with ME/CFS – The Hypnotics
For someone without sleep apnea, the course is pretty straightforward – get the patient into deeper sleep stages. When faced with a patient with sleep problems, however, most doctors think insomnia and prescribe fast-acting, short duration (Restoril (temazepan), Ambien (zolpidem) drugs – “some little Valium derivative drug” as Dr. Klimas put it (:)) that will get a person to sleep – but will not get them into deep sleep.
In fact, Dr. Klimas said that valium derivatives like Restoril and Klonopin and to some extent Ambien actually “steal slow-wave” or deep sleep and make the non-restorative sleep worse. A lot of her patients, she said, are on the wrong sleep drugs!
The new sleep drugs are mostly hypnotics which were designed to get out of the body as quickly as possible, but Klimas usually wants the opposite – long-acting sleep drugs that help people with ME/CFS get into the deeper sleep stages. That means going old-school with drugs like the antihistamines Benadryl or very low doses of tri-cyclic antidepressants (TCAs) – doses too low to affect depression but which can plunge one into a deeper stage of sleep.
Going Old-School – the Histamine Inhibitors
Dr. Klimas didn’t mention which anti-depressants, but low doses of sedating TCA’s like amitriptyline and Doxepin elixir have been shown to improve sleep continuity and quality. They also, like Benadryl, have antihistamine properties, (Trimipramine is another TCA in this class). (Activating TCA’s such as imipramine and despipramine and other antidepressants can actually impair sleep quality. Trazodone is another antidepressant which can improve sleep.) Doxepin is the only FDA approved antidepressant for insomnia. It is now being marketed in the U.S. as Silenor 3- with 6-mg dose strengths for primary insomnia.
(Dr. Cheney, Dr. Lapp and Dr. Goldstein have championed Doxepin. Cheney often combined low doses of Doxepin (10 mg) and Klonopin along with magnesium glycinate (220 mgs/bedtime) to calm the nervous system down and help with sleep.)
Blood Pressure Falling – Neurally Mediated Hypotension
Neurally mediated hypotension (NMH) isn’t mentioned as much as postural orthostatic tachycardia syndrome (POTS), but it’s a real problem. Dr. Klimas, as she is wont to do, explained that NMH is easy to understand: “Your brain is sending the wrong message to your blood vessels, causing your blood pressure to fall instead of rise when you stand.”
High Blood Pressure Masked? Because ME/CFS patients with NMH have higher blood pressure when they’re lying down than when they’re sitting up, a blood pressure check when you’re sitting – as is usually done – might miss signs of hypertension or high blood pressure.
Dr. Klimas recommended that people with ME/CFS take their blood pressure and heart rate first thing in the morning while lying down, about ten minutes after they get up, and then during any crash. She suggested doing that for a week and telling your doctor the results.
- Take salt to increase blood volume (if you don’t have high blood pressure).
- Wear pressure stockings/panty hose – which reach up to the belly (where blood also pools in ME/CFS).
- Take medications to slow your heart rate – so that more blood is pumped out during each contraction.
- Take vasoconstrictors to constrict your veins and keep the blood from pooling in your lower body.
More on Neurally Mediated Hypotension From Other Practitioners
- Check out Dr. Peter’s Rowe 1995 overview of Neurally Mediated Hypotension
- Check out Vanderbilt University’s more recent overview
Vanderbilt also recommends
- Sleeping with the head of the bed raised about 6 to 12 inches
- Mild aerobic exercise preferably done in water
- Drugs – beta-blockers, fludrocortisone, SSRIs, midodrine, disopyramide and yohimbine.
Home Orthostatic Training?
Julia Newton’s group published two studies examining the effects of “home orthostatic training” (HOT) on NMH and vasovagal syncope. HOT simply consisted of each patient standing with their upper back against a wall with their head approximately 6 inches (15 centimeters) from the wall with a cushioned ‘‘drop zone’’. The patients in the studies maintained this position without movement until they experienced symptoms or for up to 40 minutes.
Their autonomic function was assessed using heart rate variability (HRV), baroreflex sensitivity (BRS), baroreceptor effectiveness index (BEI) after 1 week, 4 weeks and 6 months. The results weren’t stunning, but they were promising. After 4 weeks, statistically significant improvements in blood pressure occurred and a trend towards improvement in HRV was found. No improvements in fatigue were found.
The vasovagal study found that 4 weeks of HOT increased overall autonomic tone with significant increases in parasympathetic and sympathetic activity, as well as baroreflex sensitivity. Unfortunately, the larger followup studies that are needed have not been done.
- Check out Health RIsing’s Sleep Resources Section
Many people stop working, not because of the fatigue, but because they just can’t do their work correctly anymore – it becomes too mentally challenging. Dr. Klimas ties this to the neuroinflammation and loads of oxidative stress found in ME/CFS patients’ brains – a fact that’s been definitively demonstrated in three NIH funded studies by Dr. Shungu.
Shungu’s studies described a not very happy environment characterized by anaerobic energy production, reduced brain perfusion (with oxygenated blood), and wonky glucose uptake. Your brain is basically not getting the oxygen it needs, it’s running on bad fuel, and its not taking up the good fuel. That leads to a buildup of free radicals (oxidative stress) that are happily ripping holes in the membranes of any cells they can find.
It turns out that the ME/CFS brain isn’t less smart than a non-ME/CFS brain, but it’s quite a bit slower, it has trouble processing lots of information, and it takes more energy to think. This is at least partially because people with ME/CFS use more parts of their brain to do tasks than healthy people. Given that, it’s no surprise that people with ME/CFS have more trouble concentrating and processing information.
Check out the blog taken from the SolveCFS seminar (below)
What to do? For one thing, take cognitive breaks. Don’t stop your mental work when you feel mentally fatigued. Stop before that happens and take a break. Also, try doing your mental work reclining instead of sitting up. Dr. Klimas mentioned nutriceuticals and drugs that cross the blood-brain barrier than can help, but saying that’s another lecture, did not go into them.
Also, consider using your brain’s inherent plasticity to rewire it – and get those pathways working more efficiently again. Dr. Klimas warned that those pathways are not coming back on their own, but doing computer games designed to enhance your memory can help you reclaim them.
Improving Cognition – From the Web (Not Dr. Klimas)
Studies suggests that improving cognition is possible in early dementia. A meta-analysis found that combined cognitive training (plus physical activity) improved executive function, processing speed, memory, and over facets of cognition in people with early dementia. Another Cochrane meta-analysis of the effects of cognitive training in early dementia, however, was unable to draw conclusions because of the poor quality of the clinical trials.
- A Cambridge University study, however, found that a brain training game called Game Show a few times a week dramatically improved the memory of people with amnestic mild cognitive impairment – a precursor to dementia.
- If you can handle more complex environments, one study found that playing three-dimensional video games (“Angry Birds / “Super Mario 3D World”) for 30 minutes per day over two weeks significantly boosted memory and improved hand-eye coordination and reaction times. Although the study used healthy controls, the researchers believed it would be helpful for dementia.
- Verywell has a list of websites (such as Lumosity and My Brain Trainer) and games that might be helpful.
- Courtney Craig is a nutritionist who has mostly recovered from ME/CFS. Check out her ideas on using supplements to reduce your brain-fog and get cognitively sharper.
ME/CFS Treatment Options Part 2 with Dr. Nancy Klimas by Dan Moricoli
As an immunologist, Dr. Klimas puts a special focus on the immune and pathogen issues in ME/CFS. Interestingly, she started off the video, not with a discussion of antivirals or immunomodulators, but on nutrition. Why nutrition? Because people with ME/CFS are immune activated and their cells are turning over at double the normal rate and using up resources, including basic nutrients.
Her nutrition studies suggest that people with ME/CFS are a bit low in nutrients. Even if they’re taking B-vitamins, they tend to be low in them. Minerals, particularly those used by the immune system such as selenium and zinc, are low.
She gives supplements 3 months to work. If you haven’t noticed a difference in how you feel in 3 months, she suggests starting to clean out your sometimes enormous box of supplements. She starts out with basic supplements that have been assessed in placebo-controlled trials.
A good diet light on sugar is essential. A good super B-complex (in particular B-1, B-6) and sublingual B-12 are recommended. Omega 3 fatty acids are anti-inflammatory, enhance immune functioning, and help with atherosclerosis. Placebo controlled trials show some benefit. She recommends 4 grams a day.
CoQ10 gets inside the cell better than any other antioxidants, is anti-fatiguing and cell protective. She recommends 100 mg 2x per day or 200 mg 1x per day.
NADH increases the energy inside the cell. A small placebo-controlled study suggested it can be helpful.
Other supplements include magnesium to prevent muscle spasms. She noted that licorice root is often used in place of Florinef to increase blood pressure, but that both drop potassium levels down. Low potassium will cause an otherwise healthy person to feel like they have ME/CFS – and can cause fatal arrythmias. If you’re on Florinef or licorice root, she recommends getting blood tests to check potassium levels.
Potential supplements that may have antiarrhythmic activity include omega-3 polyunsaturated fatty acids (N-3 PUFA), coenzyme Q10, and carnitine.
(Clinical studies show that N-3 PUFA or fish oil supplementation appears to reduce mortality and sudden death. Coenzyme Q10, used in the treatment of heart failure, and carnitine and its derivatives may have beneficial effects on arrhythmias.)
(Check out Courtney Craig’s website for more nutrition related ME/CFS information.)
ME/CFS Treatment Options #3 with Dr. Nancy Klimas by Dan Moricoli
Coping and Exercise with ME/CFS and GWI
- Find this video at Dan Moricoli’s ME/CFS Community website
Having lead major research efforts on both, no one is better equipped to talk on the similarities and differences between ME/CFS and GWI than Dr. Klimas. The case definitions are almost identical, the symptom presentations are the same, and each group faces similar problems: non-restorative sleep, post-exertional malaise, cognitive problems, irritable bowel, etc.
Dr. Klimas’s coping advice to GWI patients is the same as her advice to people with ME/CFS – find your threshold and stop there. Get the drill sergeant out of your head and don’t try to push through your pain and fatigue.
If you wake up feeling like you’ve had restorative sleep, don’t run around and get a lot more done – do the same amount of activity you do during bad days – no more.
(The ME/CFS and Fibromyalgia Self Help website is the place to go for more on pacing and coping.)
A more precise way to engage in safe amounts of activity is to get on an exercise bike and determine where your anaerobic threshold is (the point at which your body stops using oxygen to produce energy and starts generating energy anaerobically – a quickly toxic process).
Any exercise should be done very quickly! Depending on how well you are, perhaps 90 seconds with your pulse elevated perhaps 30 bpm over resting. Then stop, lie down, let your heart rate calm down, and then perhaps do it again, depending on how you’re doing. Caution is the word – maybe one, two or three sessions a day. If you’ve crashed the next day then back off.
After a severe case of ME/CFS, Dan Moricoli very slowly returned to health using the exercise program and later yoga.
How a Heart Rate Monitor based exercise program helped one person
Dysautonomia International has a three part section on exercise for people with dysautonomia which begins with very small exercises for the bedridden and severely ill. They state:
“We have known dysautonomia patients who were bedridden for years and were able to work their way from “barely able to move” to biking 45 minutes a day, everyday. It will be hard. It may make you feel worse in the beginning, but the body was meant to move.”
The Stages of Coping
Grieving, looking back, regretting and not looking forward. The first thing to do is to accept that you have this illness, that you are now limited and stay within your energy envelope. Figure out what your greatest priorities are and focus on them.
Lastly, in the research update section, Dr. Klimas provides a message of hope. Her research group now includes 62 people (!). Their computational biological work has gotten to the point where she now hopes they can leap into “effective clinical care”. It’s taken years to get to this point.
In their “reboot studies” they’re doing virtual clinical trials to learn how to return ME/CFS patients’ systems to homeostasis and uncovering biological subsets and focusing on how to treat them. (They’ve published a rash of papers in the last six months.)
In GWI, they’ve bee able to move from concept to laboratory work to animal studies to human clinical trials very rapidly because they have the federal funding to do that. All this occurred within five years (!).
Not so with ME/CFS, though. While the Institute for Neuroimmune Medicine has received federal dollars to help them better understand ME/CFS, they’ve been unable to find a funding source for their treatment work. (The NIH’s program announcements have not allowed funding for clinical trials.) All the work translating their results to effective treatments and clinical trials has come through private donations.
They would welcome your help!
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