Nancy Klimas has been treating and researching ME/CFS for over 30 years.
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.
SLEEP
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
Many people with ME/CFS Dr. Klimas asserts, are on the wrong sleep drugs
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.
Possible Treatments
- 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
- Biofeedbak
- 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
Cognitive Problems
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)
Helping Cognition
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
Nutrition
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.
Dr. Klimas gives supplements three months to work
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.)
Exercise
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.
Research Update
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!
Please Support Health Rising as Well!
After trying 8 different sleep meds with no success, after a decade I’m finally getting ‘OK’ sleep with 2 mg. Melatonin, 6 mg. of Promethazine, which is an anti-histamine and 1/2 a tab of the lowest dose of Xanax, which works better than half a tab of Ativan, even though they are both in the same class of benzodiazepines. I’m assuming because I’m dreaming a lot more that I’m getting a bit better quality of sleep.
It is discouraging however that my POTS seems to be gradually getting worse with gradually increasing resting heart rate, dizziness and wicked heart palpitations which seem to increase all my neuro symptoms like body wide nerve tingling like you’ve suddenly touch a hot wired fence!
It’s so encouraging that Dr. Klimas has such a large team now and it sounds like they are making some progress.
I’d like to explore sleep apnea, starting with the simplest at-home test and progressing to more complex if needed. Does anyone have experience with an iphone app, and/or with the doctor-ordered at-home test?
We’re going to have a major sleep blog coming up.
I haven’t tried it but this might be a possibility – https://www.healthrising.org/forums/resources/how-to-use-your-smartphone-to-detect-sleep-apnea.113/
Thanks! I read this, but wondered if anyone has tried it and had information to share.
Madeleine, At home sleep testing is highly insufficient for determining sleep apnea.
We’ll have more on sleep testing at home and in a sleep lab in an upcoming blog. My understanding is that at home sleep testing can point one to a possible sleep apnea diagnosis but can also miss many people.
It is good to learn that doxepin elixir is recognized by FDA as having a role in getting all the stages of sleep. I use it plus a little bit of clonazepam (generic Klonopin). Neither alone gets me to sleep, but both work. I had the luxury of full-night tests at a sleep lab with and without the medications combined to demonstrate effectiveness for me. The combination was suggested by Dr Cheney, and the sleep lab was near my home. It is still not refreshing sleep, but so much better than no sleep. Thanks for this discussion.
Benadryl is anti-cholinergic, which is why I don’t take it. I take 50mg Trazodone (sp) and 4.5mg LDN prior to bed and this recipe seems to work. It takes a while to acclimate to Trazodone, and for the first month I felt drowsy in the morning, but now it works like a charm. Trazodone has the added benefit of being a possible anti Alzheimer’s compound. There is lots of info online about the recent interest in its potential off label benefits.
Trazodone is a really interesting drug! The IACFS/ME primer I believe ranks it pretty high among sleep drugs. Congrats on finding a good one.
I have been using Trazadone successfully for 23 years. I sleep about 8 hours per night and wake up non-groggy. It was initially prescribed with Prozac as an anti depressive with sleep triggering side benefits. I swear by it and have not had another depressive episode in all that time. 5 years ago I developed CFS following a bout with cancer and chemo fatigue. The Trazadone still ensures I get to sleep each night. No side effects. The CFS drawback now is that the sleep, while 8 hour, is un-refreshing. I wake up exhausted. But any night I forget the Trazadone, I don’t get to sleep.
My internet didnt allow me to see the video at the moment, so dont know if this was mentioned or not. In addition to obstructive type sleep apnea there is also central sleep apnea that may or may not involve snoring. Central sleep apnea can be caused by a number of conditions that affect the ability of your brainstem — which links your brain to your spinal cord and controls many functions such as heart rate and breathing — to control your breathing ( from mayo site). A person can have both types. There are explanations for this brain dysfunction and one is basically not understood- idiopathic i think it was called. So for central apnea i dont think its a body type thing, its a brain thing.
I am 5’4” 133lb. Eat 80% plant based, walk 30mins a few days a week. No diabetes or high blood pressure. Suffering almost 20 years with CF sysmtoms. I have and many test and all negative. New doctor just order take home sleep apnea test and I was diagnosed with moderate sleep apnea. I have not started treatment yet (waiting on appt) but am very hopeful that over time the CPAP will help me get better.
I would be surprised if it didn’t help you feel better. Good luck!
Thanks for another great article, Cort!
My apologies in advance for the long comment, but I’d like to describe my journey to better sleep with the hope that it might help some of you.
I assumed years of chronic sleep deprivation would ultimately kill me. At most, I was getting only 3-4 hours of non-restorative sleep per week. Per week!
After multiple sleep tests came back inconclusive for sleep apnea – inconclusive because I didn’t sleep at all, no matter how much they drugged me – my doctors just shrugged and blamed me and my “maladaptive behaviors” for my lack of sleep. (They ignored the fact that my oxygen sat was in the 80s at its peak.)
I’d tried every drug mentioned in this article and more. I eliminated sugar, gluten, and carbs from my diet. I changed my nighttime routine, removed all electronics and blue lights, and purchased a new mattress. I tried to deprive my body of its senses by using a weighted blanket and wearing ear plugs, an eye mask, and a bite guard. I even wore an electromagnetic frequency machine on my head to try to stimulate sleep-inducing brain waves. I was so, so desperate, but nothing helped.
Finally, after years of intense jaw-related pain, an oral surgeon realized I had severe Upper Airway Resistance Syndrome (UARS) which was made worse by the collapsing of my airway due to Ehlers Danlos Syndrome. In short, my airway diameter was less than that of a coffee straw stirrer and I was slowly suffocating to death.
Apparently, most sleep studies do not include a test for UARS, and it is thus overlooked and underdiagnosed.
After the first lines of UARS treatment didn’t help, I opted for orthognathic (or MMA) surgery to save my life. It’s a very serious surgery which involves breaking the jaws and advancing them forward to widen the airway, and the recovery takes about a year. I’m only a few months post-op, but I’m sleeping so much better! It’s incredible! I still have plenty of pain and fatigue, but I’m able to get out more, walk my dogs, and even ride a bike again!
For those of you who don’t fit the criteria for classic sleep apnea but feel like you’re struggling to breathe or have air hunger, I’d suggest being tested specifically for sleep apnea. Otherwise, see an oral surgeon and ask for a 3D CT scan of your airway, which is how I was ultimately diagnosed.
Hoping for better sleep for you all!
Wow…I have heard of several other people with this issue. Thanks for the reminder.
Cort,
The video with the information Nancy Klimas was discussing Xyrem was from almost 10 years ago. The FDA did not approve Xyrem from Fibromyalgia. So without a confirmed diagnosis of Narcolepsy than medication will not be available to us.
Hope this helps.
Well, I’ll be a Monkey’s Uncle (I wonder where that phrase came from?). And I thought I was presenting new news.
I saw that the first video was uploaded by SolveCFS just this year so I assumed that it was done this year! I now see that the second video was uploaded 5 years ago.
The last one, though, is a recent one.
My apologies. (I knew there had been several Xyrem trials in FM years ago but thought some big Xygrem trial must be proceeding in FM. What a shame it was not approved)
I also thought from your video and post thad FDA changed its opinion about Xyrem which should really be helpful. Please be careful about this.
I was disappointed as well. As I noted, the video stated that it had been posted on YouTube this year – so I assumed it was from this year. I’m not sure how to determine the actual date of a video. Most video’s immediately show up on Youtube but this one took years to show up there. This will hopefully be a one-time situation. That said, I apologize for any upset it caused.
@S.A.
You beat me to it! I was going to mention UARS as well–but I think you did a much better job! I have EDS too and so am well aware of it. UARS often does not fit the usual apnea type symptoms or body type (and Central Sleep Apnea doesn’t often fit them either).
Cort, thank you for giving us an extra good post! I always love it when I can read potentially patient actionable information!
Because I am not making a dent in my energy levels, I’m thinking of revisiting a sleep evaluation. I didn’t sleep at all in my last test–mainly because those little sensors, which they glue all over one’s head, cut off my circulation and gave me a horrible numb skull and headache–so bad I couldn’t sleep. There were other reasons as well…
One thing the tests showed was my lack of deep sleep. Xyrem is one of the few drugs which promotes it, but cannot be taken with CNS depressants (like opioids). Since it is also known as a ‘date rape drug,’ doctors are loath to prescribe it.
For those of us with dysautonomia (for example POTS), Dr. Pocinki and other EDS specialists suspect that adrenalin surges during the night can cause micro awakenings–and prevent restorative sleep. Most sleep technicians are not trained to look for these.
As for sleep medications I have personally tried, Trazadone made me initially sleepy, but had the unfortunate effect of jolting me awake at about 5:00 a.m. each time I took it.
As Maren said, Benadryl is anti-cholinergic and while it can promote sleep, it has the characteristic of inhibiting brain function (think brain fog)–not to mention dry mouth.
Although Flexeril is also anti-cholinergic, it can promote sleepiness and also help with pain as it is a muscle relaxant.
I have found taking melatonin late in the afternoon to be helpful. If I take it too close to bedtime, I often have a melatonin ‘hangover’ the next morning.
Finally, I find a cannabis gummy, 10mg. CBD and 5mg. THC, very helpful when taken as a pre-bedtime snack.
And sitting in a hot tub just before bed can help too–if you can stand it.
Of course I have tried all kinds of other sleep promoting supplement blends but most did not have much of an effect.
Sorry for the extra long post but perhaps it may help somebody.
Great article Cort!…I’ve had the usual sleep depraved symptom that most of us get with this dreaded disease for almost 20 years now…Like Nancy B. and S.A., I’ve went through the useless ritual of sleep studies with no avail…My original primary care doctor, a holistic MD, had a test done on me for Serotonin and Dopamine, and found I was low on Serotonin…Whether this was caused by me being a Fragile X carrier( that can have its own set of symptoms!), or the basic ME/CFS trigger, is anybody’s guess!..The thing is 2 out of 3 of my daughters suffer from some degree of ME/CFS with IBD and serious sleep problems as well…I think Dr. Klimas and her team are doing a great job and on the right path to see some more light at the end of the tunnel!…
Thanks for summarizing the videos, Cort. Without captions my hearing doesn’t allow me to understand videos.
I’ve tried all of the alternative sleep options Dr Klimas recommends and couldn’t tolerate any of them. I get my sleep with a combination of clonazopam and a small amount of hemp CBD, plus good sleep habits ( no lighted screens, same bedtime, etc)
clonazopam has been getting a bad rap with a lot of doctors but before a doctor tried me on it I was nine years unable to tolerate light or sound, had eye jerking when I tried and muscle jerking. That meant no computer, no tv, no music, no company. It gave me part of my life back.
A lot of people use Klonopin – I think it may be the most used drug in ME/CFS. I find that when I can’t sleep high THC cannabis almost always does the trick.
My doctor got me an MM card but anything with even a small portion of THC in it sends my tinnitus into a screech so i went the hemp route, which I doubt is as effective. Dr Rey at Klimas says she has other patients on the hemp, too, and it helps many of them. My repertoire of things I can use is miniscule.
I haven’t tried Klonopin, but you saying it’s one of the most used drugs makes me want to try it. It must be helping some people.
But then Dr. Klimas saying don’t use it.
What’s a girl to do?
Thoughts?
Hi,I could not read now the most of it and see the video’s but something catched my eyes. the excercice. I admire nancy klimas for her word and follow her for a verry verry long time but she changes every time how we must excercice. Especially the short sentence that you let your heart beat go up for 30 beats or so for a verry verry short time. that is for many of us, at least the 25% aerobic. I had a little bit of hope to gain some strenght being so severe and declining if i would use a smartwatch and stay in my anaerobic zone. But then i watched these short video”s.
https://workwellfoundation.org/research-latest-news/
as if I understood, maybe misunderstood, but even staying in your anaerobic zone and trying to “excercice” is it also not. we are just ill. they explain it there.
so how could nancy klimas on excercice recommend such thing? or am I to ill to understand?
Yes, I was a bit puzzled about the exercise stuff too. I’ve had ME for about 20 years. All that time, I’ve kept doing every bit of physical stuff that I could; I have walked 1000s of miles by now, with my dogs. I have had horses, cleaned my house, taken care of pastures and gardens etc. Yet, my tolerance for exercise has never increased. More routine exercise does not lead to increased tolerance and ability; it simply leads to a big crash. My ME has never got better, or gone into remission, or gone away, despite keeping as active as I possibly can (I love being outdoors, i love being active). But I still crash and end up in bed if I do much. I’ve never reached a place where, because I have steadily walked, then I can start doing aerobic exercise. Even a few minutes on a stationary bike for a heart stress test can land me in a crash. I thought PEM was a key symptom of ME … how does raising your heart rate not create PEM? How does creating PEM help one to get stronger and recover?
It actually is good to push yourself in a very limited way, which, if you watch Dan Moricoli’s video, includes assessing your heart rate the day after. If it’s increased then back off and try again – you pushed too much.
I don’t mean pushing it like we think of pushing it with regular exercise. I mean the kind of pushing it that inevitably occurs whenever we work a muscle that hasn’t been worked for awhile.
Always do very short bursts of exercise – probably recumbent – and that probably does not include walking interspersed with substantial rest periods.
My strong guess, though, is that you’ve (like me) have been doing too much. We’re probably very similar. – I want to get out with the dogs, I want to go on my short walks, I want to keep active and I probably deplete and I never build. We both probably need to cut back, rest more and hopefully build.
If you were to do Workwell’s 2-day exercise test you might very well be in for a shock. She talks about people who do the kind of exercise you do – and have surprisingly screwed aerobic energy production systems.
I tryd to be as active as possible to but the only effect it had, was getting bedridden. Ill for more then 3 decades. but what I do not understand from workwell 2 short video’s where I have posted the links, is if even on my bed, not aerobic excercise like few stretches with my leggs, is also “forbidden”, that you get worse even with that. If you have the streght, please look at it and excplain it to me. if you can/want. thanks!
I’m with you, any exercise programme that says you may feel worse for awhile should be avoided.
The only one to trust atm (imho) is the Workwell Foundation. I followed their guidance of
1. Staying below my assumed AT,
2. Limiting any activity between that has my HR been resting HR and AT
3. Monitoring HRV every morning,
4. Monitoring physical symptoms closely whilst attempting activities
5. Strictly placing all other activity e.g. cognitive.
I found dramatic increases in my physical functionality and a reduction in pain. But anytime I accidently did physical activity that felt even slightly challenging (i.e. slightly out of breath or limbs beginning to ache) then I would crash.
I’m hoping Dr Klimas etc do not actually encourage ‘pushing’ it when it comes to exercise and it’s just semantics, but people reading that don’t know about workwell might end up overdoing it by misunderstanding.
I don’t want to misrepresent Dr. Klimas’s program. She is careful to say that if exercise one day makes you worse the next day then you did too much.
She uses a heart rate monitor to determine how much exercise to do and uses a heart rate monitor the next day in the morning to help assess if the exercise has been too much. She also, like the Workwell program, advises substantial rests between short periods of exercise.
With regard to “pushing it” – a term I clearly shouldn’t have used – any exercise that works muscle that have not been worked before is by definition stressing and pushing them. That includes having someone who’s bed bound sit up perhaps and do arm circles in the air. That’s what I meant by pushing it.
Please see Dan Moricoli’s video to understand just how slow and careful her program is.
So glad Dr Klimas still recommends Benadryl.in Canada recently there are advices against it. 12.5 mg of Benadryl does the job for me. It does not come in such low dosage so I patiently cut my 25mg pills in two. Since I am also allergic to many things, it helps. A few years ago, I read an article by a physician who had ME. Can’t retrieve the article. I think he passed away since. He had a chart, vertical lines, where he would demonstrate the increase of his symptoms including allergies.Anybody can help ?
Cort, I will have to read this excellent articles many times…
Thank so much for posting these videos, Cort. I always enjoy Dr Klimas and have a great respect for her. However, when we are dealing with very severely ill people, these suggestions do not move the post. Panty hose, and Benadryl, and other suggestions do not really help when a person is bed bound and very sick. It almost seems as though these suggestions seem for the mild to moderate. This is a serious illness, and these suggestions though well meaning are not going to cut it with someone who is violently ill, and reactive. I should add, we have tried all her suggestions for close to two decades, tried them religiously, and still, the illness progressed. Please don’t misunderstand–I adore Dr Klimas, but the illness needs more help.
Agreed. This was a quite basic cut – it will certainly help some but the seriously ill are too complex.
totally agree with you. I am a verry severelly ill one. only declining further. like many of the 25% group.
PS. one final comment: almost 20 years ago, Dr Teitelbaum said all of these things, and they are to be found in his book From Fatigued to Fantastic. I am greatly discouraged that in 20 years we are just reviewing what other physicians said decades ago. We travelled this road; and saw Dr Teitelbaum and heard all these things–and this nightmare illness just marched along at its own pace become more and more cruel and more and more disabling.
Please dear researchers, please, speed things up.
Yes, this was pretty basic stuff although there was some stuff I was not aware of. Dr. Klimas is, however, working on the skinny branches of new treatments – teasing out subsets with her massive data bases. Because she’s had the funding she’s moved quite quickly with GWI; if she can get the funds – she needs our help and she needs the ability to get federal funding for clinical trials – she’ll be able to move more quickly with ME/CFS.
I was diagnosed with severe obstructive sleep apnea (AHI 37) after an in-home sleep study this year. A previous in-clinic sleep study back in 2006 (I’ve had ME/CFS for 20 years) was okay. Treating with CPAP seems to be helping but it’s effects are subtle and not immediate. It also takes a great deal of perseverance with finding a well fitting mask.
What promoted the repeat sleep study was my Oura ring showed virtually no deep sleep.
Cool = thanks for mentioning Quora and the fact that you did a home sleep study. We’ll get into more home sleep studies in a future blog.
Thanks, Cort for such an in depth article as well as I am looking forward to your upcoming sleep blog article mentioning the Quaro Device as been really wanting to know about ?
I have severe sleep apnea and severe ME.
I was reading Jeff Wood’s Mechanical basis of ME theory just now, and he talks about matrix metalloproteinases (MMPs) as the source of collagen degradation that could lead to CCI & ME.
You know another disease that has a strong correlation with increased MMPs? Sleep apnea. And the worse the apnea, the higher the MMPs
https://www.ncbi.nlm.nih.gov/pubmed/31060030
MMP-9 is elevated in CIRS (mold illness) also. Dr. Shoemaker considers normal range 85-332 ng/mL
“MMP-9 delivers inflammatory elements of of blood into subintimal spaces, where further delivery into solid organs (brain, lung, muscle, peripheral nerve and joint) is initiated.” (Surviving Mold, Lab Tests for Mold Illness)
It’s crucial patients get the proper diagnosis (easier said than done.) Some patients are unable to achieve deep sleep due to persistent crashing, e.g. going too deep, too soon/bottoming out, perhaps caused by NMH or a component of the general orthostatic intolerance issues PWMEs face, which in turn triggers microarousals, so we can cycle all night from stage 1, 2, REM, AWAKE, & never really get restful sleep.
Patients who crash will be ADVERSELY affected by hypnotics/sedatives & conversely require mild, slow-releasing STIMULANTS in order to achieve restorative slow wave sleep…My specialist said a houseboat would be a great solution for my sleep disorder, but that wasn’t covered by insurance, so stimulants it was!
I was about 40 years old before I ever had experienced what restorative sleep felt like thanks to Pseudoephedrine & the spectacular sleep specialist who was able to make the correct diagnosis, where others had failed and made errors obvious to even a lay person with little understanding of the field.
I felt so incredible for so long that I actually thought my M.E. had been cured, but it was just a really spectacular remission that resulted in the healthiest & most productive years of my life.
Slow release stimulants helped you with better sleep – isn’t that something!
Your comment is very interesting Dawn. I think so much of this illness is counter-intuitive.
On of my fears when I was speeding around fired up by my reaction to chocolate (raised blood pressure and heart rate – adrenaline?), stress and lack of sleep was that I would just drop like a stone, if the stimulants weren’t there to keep me going.
I suppose if our bodies sense we are dropping too low in say cortisol, then it’s going to send out an alarm, which may wake us up.
What seems to be happening with me now is a very slow re-balancing of my body. I envision this like turning an enormous ocean liner around and I need to be patient and build on small improvements.
I seem to be able to sleep for longer and deeper as I build up more stamina. When I felt like I was right on the edge (as I was beyond exhausted) there was nothing to ‘hold’ me safely while I slept.
Saw this yesterday and was aware my brain would go into meltdown if I tried to make a comment because I’d already used up (over used!) my available quota of brain use…
So the sleep issue is huge for me. I didn’t realise I wasn’t getting restorative sleep or how important it would be to achieve better quality sleep.
However being desperate earlier this year I was willing to try it. Was aware of what Dr Nancy Klimas, Dan Neuffer and Professor Matthew Walker in discussion with Dr Rhonda Patrick (foundmyfitness.com) were saying and thought it was worth a go.
I had to avoid food that I was intolerant to – they kind of act like a sedative and knock me out – but I don’t get restorative sleep. I didn’t realise that as I seem to have spent years asleep and didn’t know the difference.
I also had to manage to ‘let go’ enough of the issues (including being so ill) to try and reduce my stress levels.
I then tried to go to sleep at a regular time, like 10.30pm or so, and try not to sleep in the day.
It actually worked. That was April this year. So 6 months later I’m doing fairly well. It hasn’t cured me but it’s considerably improved my functioning.
I can now eat a wider range of food, which is very significant because I was really unable to find food that would keep me going. I was eating chocolate, which was turbo charging me but also putting my blood pressure up and the dairy and fructose were causing problems.
So, at present, I don’t feel that dragging tiredness, I generally sleep much more restoratively, I don’t need the stimulants to survive my day and I can eat a nutritious diet, which would make any regular dietician have nightmares – but so what!
I do take supplements: a multivitamin with phytonutrients, which is high in B vits, Omega 3, magnesium, CoQ10, Macushield (eyes), a probiotic by Bio-Kult called Migrea (I don’t have migraines but thought the little fella’s might help my brain) and I take a digestive aid/enzymes with betaine hydrochloride (which helps protein digestion)
More recently I came across a supremely complicated article on sleep, which focussed on what I believe has helped me. I can understand enough of it to know it’s relevant but it is full of acronyms. The more scientifically minded might understand more of it than me.
Don’t know how to do the links, so the the title is: Interactions between sleep, stress and metabolism. From physiological to pathological conditions. It’s by Camila Hirotsu, Sergio Tufik and Monica Levy Anderson 2015 Sleep Science – hope that works – will learn how to do the links…
Over the last 6 months I went through a time, as my stress levels receded, when I felt more normally tired – like I could sleep for a week. But unhooked from the wired and tired feeling.
I do feel very frustrated that I can’t do more. I don’t have the muscle issues or fibromyalgia, I have brain and immune issues.
I was thinking of making up some sort of chart, where I can track my daily experience. I am much better in the morning, like now. However I just sort of burn out gradually through the day and the worse I get, the less able I am to quantify what’s going on.
Anyway, one thing I do know is I need to stop writing this!
Thanks for the great comments Tracey and thanks for the nod to the paper. For those who are interested here’s the link 🙂
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4688585/
Thanks, Tracey Anne for all your tips and sharing ? I have been hit allergies and a severe tooth infection lately and pretty much haven’t been myself or haven’t been able to stay on top of my self care..
Warm hugs to u..
Hi Lora,
Thanks to you too – I believe you pointed out on another comment about the Bateman Horne Center videos – I’ve started watching them and have found them validating and very helpful so far ?
Are us Aussies leading the way?
https://news.griffith.edu.au/2019/11/12/researchers-discover-potential-therapeutic-approach-to-treat-me-cfs/
I would be interested in trying Naltrexone but I have to get past the psych barrier first.
My immune system also ‘sees’ anything it doesn’t like the look of as a threat and launches a fairly deadly response.
But they’re doing great work there at Griffith’s.
I know that professor De Meirleir from Belgium used naltrexone for more then decades in ME/CFS patients. It didn’t make most of them better. So i would not put my money on this drug. Sorry.
But it might help some people, at least, manage their symptoms.
I have asthma as part of this illness package. Wasn’t diagnosed for around a year or two as I don’t wheeze – my lower airways constrict and get covered in mucous and I felt like I was suffocating – I actually was suffocating…
I’m managing that now with a corticosteroid inhaler and avoiding inflammatory foods etc.
I think for the meantime, until a ‘cure’ is found managing the illness is the best we can do.
Don’t be sorry! I don’t want false hope, so that is good to know.
Maybe it affects a dysregulated receptor, but perhaps that receptor is secondary to the core cause of the disease.
I THANK YOU for this wide-ranging, in-depth website, and your up-to-the-minute, skillfully-wordsmithed blog posts. Healthrising.org is “MY ONE-STOP SOURCE” on ME/CFS and FM. When online here, I feel part of a community. I feel less an isolated victim … and more an informed patient all about ME/CFS … even a potential advocate. THANK you, Cort — again + continually — for giving your limited energy to help us day after day … even at the expense of your own ME/CFS disease.
P.s. Cort — Please see my comment at the end of those after Sadie Whittaker blog, re: — Dr. Lapp’s differentiation of 22 sub-types; pls let us know them!
All — Please see my comment at the end of those after Sadie Whittaker blog, re: my being ME/CFS bed-bound & living alone near NW DC — Would love pen pals.
Unfortunately I cannot find them. I will look on my other computer when it gets back from the shop. I’m hoping they are there. My gmail seems to be destroying attachments.
I think we’ll be able to find you pen pals – stay tuned.
The link for “Check out Dr. Peter’s Rowe 1995 overview of Neurally Mediated Hypotension” in the NMH section is broken.
Fixed – thanks!
Sleep is such a huge issue! I had knee replacement surgery and could not sleep for 2 months after. I was so exhausted and couldn’t heal properly. My rheumatologist suggested trying Trazadone. Initially helped but after about a week it stopped working. I alternate between Lunesta, melatonin, Trazadone, Benedril and Flexaril. I wake up multiple times during the night, at least 6 times most nights. I had naive hopes that getting the knee pain fixed would solve my fibro symtoms but it did not. My knee pain is gone but alas I still have all my old symptoms.
Thanks for all the great information Cort!!! It was interesting to see all the medications I’ve tried over the years listed in this article. I’ve probably tried 80% or more.
I’ve had 2 sleep tests. Words of the doctor “everything that can go wrong is wrong in your case”.
Meaning mixed sleep apnea, high number of micro-awakenings, almost no deep sleep, and even ‘breathing shallow’ which he said they only see in obese people normally.
His vision about traditional sleep meds are the same as dr Klimas: they only make you ‘feel’ like you’re asleep but they won’t allow deep sleep.
That being said: I’m not on these drugs anymore (changed to low dose amitryptilin & lyrica) and still the result remains the same.
The thing I’m missing here is the option of high intracranial pressure (ICP) while lying down. In a 2018 study (Hulens, Rasschaert Et al) they found high csf pressure in 50% of tested ME/CFS patients.
To me this all seems to be a brain/spinal cord issue.
Csf & bloodflow off.
Perhaps it’s a coincidence but I just found out my head falls back 67degrees (normal is 33 with upper limit 55). What happens when your head falls back (yes even while sleeping according to my partner)? Your tongue drops to the back & you get an obstruction of air. Plus blood vessels in your neck might get obstructed too.
They shld look at ICP, csf and bloodflow too imo. This could explain a lot for a subgroup of patients.
Which is contradictory in ME and some patients many patients feel worse after a good night’s sleep if they have slept less they feel better. Strange…
https://en.wikipedia.org/wiki/Orthopnea
In my case, and I think many other patients have this too, I need to wake and move during the night. Getting up and going to the toilet. Turning me around every time I wake. Move my legs every time I wake. Get out off the bed after less then 8 hours of sleep and rest a bit spread during the day if needed.
The likely reason? When laying too long without moving in bed, blood flow and fluid accumulation goes badly wrong. The longer this lasts, the worse the problem. Moving and getting up at night partly restores normal fluid balance.Still, even with doing that in the morning I need to get out off bed as its effects keep accumulating over the hours.
Interrupting and “destroying” my sleep in such way made my now mangled sleep quite a bit more restorative and improved my health considerably over the following months. But sure doing this as an already very exhausted patient is challenging to start with!
Wow! This is certainly one of Health Rising’s greatest article, not only because of Dr. Klimas’ contribution to it, but because of all the very practical information participants shared about solutions they found and applied; those that seem to work and those that don’t.
I’ve suffered from chronic insomnia for as long as I can remember, even as a toddler. ME only started when I was in my late 40’s. Lack of sleep as a whole and lack of deep sleep are are major factor in my ME. It’s obviously a big issue for all of us.
My medication regimen is of a conventional type : stimulants during the day, and hypnotics at night – but not every night.
Sometimes a sublingual tablet containing L-Theanine 10mg, 5-HTP(from seed)15mg, Melatonin 1,5mg.
Benadryl stopped working for me a few years ago, and when it did, it would leave me groggy the next day, which was counterproductive.
I’m not going to use space here for a nomenclature of all the drugs, supplements, techniques I’ve tried. Lets just says that at this moment, my sleep problem is worse than ever.
This is why I am sincerely grateful to all of you for posting information about your “recipes” and for sharing your knowledge. Through this thread, I learned about products I did not even know existed, let alone that they could promote a restorative sleep, alone or in combination with others.
I’ll make notes and discuss possibilities with my general practitioner when I see him in February.
Cheers to all,
About sleep: For me Gabapentine is very effective against my problems falling and staying asleep. At this moment I use 3 x 300 mg every evening.
(It was prescribed by my neurologists against small fiber neuropathy pain, but does not help me against that.)
Great summary of treatment options. Thanks Cort!
What the heck is “GWI”? I’ve been reading Health Rising for years, and have never encountered this. I skimmed through the whole article; couldn’t find any explanation.
A Google search produced only irrelevant things abbreviated “GWI”. Does this site have a list of common abbreviations somewhere?
Hi Christine,
In case Cort is off on another mission, I believe GWI stands for Gulf War Illness, which Dr Nancy Klimas works on, alongside her ME/CFS work.
This is very confusing and it does not work! Is this her suggestion for Dr Davis”s son,Whitney? This is a waste of time for anyone to try to grasp with cfids. Nancy Klimas has been involved in CFIDS for a long time, shame on her to group all cfids patients with a treatment that may make things a lot worse!
What does not work? Maybe something in the blog was not clear. Dr. Klimas has been treating patients for decades. I doubt she would present something that she’s finding in her clinic makes patients worse.
If its exercise she uses a heart rate monitor to keep exercise below a certain level, emphasizes short exercise periods interspersed with substantial rest periods, then uses a heart rate monitor the next morning to determine if more rest is needed.
With regard to Whitney: he’s being fed food and liquids via a tube, cannot verbally communicate (without Ativan), stand virtually any stimuli, cannot stand up or move himself substantially…..he is far beyond the reach of any exercise program.
Please see Dan Moricoli’s video for an example of a severely ill patient who did very well on Dr. Klimas’s “exercise” program.
Inflammation has been implicated in mental congnition problem in the past. In the latest study, the researchers injected subjects with Salmonella Typhoid vaccine to create inflammation and then observed ensuing brain fog: https://www.birmingham.ac.uk/news/latest/2019/11/link-between-inflammation-and-mental-sluggishness-shown-in-new-study.aspx
In case of CFS though, it could be the brain’s hypersensitivity to inflammation, not the magnitude of inflammation itself, that is bringing about the brain fog.
I have read that ringing in the ears will not let your mind rest at night causing you not to get deep sleep. I have ringing in the ears and I wander if this is my problem.
A wonderful infectious disease specialist at Mass General, Boston told me I had to go to a sleep center asap to treat my insomnia. Since Mass General’s sleep center had a 6 month waiting list, I ended up at my local hospital sleep center where I had the good fortune to work with Dr Glovinsky. He had me keep a sleep log. When he reviewed it he immediately said “your circadian rhythms have dissipated and we are going to reset them with light therapy. “ Since I was completely house bound, never got outside, and had no daily routine except going from bed to couch day and night, this made perfect sense.
I had to go outside and sit in the sun every morning at 7AM. When fall came, he had me buy a light box to continue the routine. I have been doing this for 20 years now, it makes an incredible difference in my sleep.
Yet I never see light box therapy to reset circadian rhythms ever mentioned, especially in discussions of treating insomnia in MECFS patients. I was diagnosed in 1986, so I have been dealing with this disease for a very long time. I consider light box therapy to be among one of the better treatment suggestions I have been given, among many that did not work or that actually cause harm, even hospitalizations.
Thanks very much for spreading the news Kate. We have a sleep series coming up and your light box/circadian rhythm practice will be in there 🙂