Dr. Bruce Campbell used pacing to help him recover from ME/CFS. Check out his CFIDS Self-Help website for ways to support your health.
(Thanks to Bruce Campbell of CFIDS and Fibromyalgia Self-Help for Chronic Fatigue Syndrome for allowing Health Rising to reprint his article. (Some images and captions added).
With so many choices available, a guide to basic supplements for ME/CFS and FM from one of our most experienced doctors is much appreciated. Please note that the CFIDS Self Help website excels in two of Dr. Lapp’s other important facets of ME/CFS and FM treatment: stress management and pacing.
Prohealth is featuring Health Rising this month in its Making A Difference campaign. Buying Prohealth supplements this month through this link will support Health Rising. Now onto Bruce’s article.)
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Dr. Lapp’s Recommended Supplements for Fibromyaglia and ME/CFS By Bruce Campbell (updated 3/2021)
Should you take supplements? If so, which ones and what benefits are reasonable to expect?
What supplements should you take?
For some answers, we turned to Dr. Charles Lapp, director of the Hunter-Hopkins Center in Charlotte, North Carolina. Dr. Lapp has treated CFS and FM patients for over 25 years. The clinic is one of the few medical practices in the United States to specialize in CFS and FM.
Dr. Lapp is one of only two people to be given the Outstanding Clinician Award by the IACFS (International Association for CFS/ ME), an organization of leading CFS researchers and doctors.
Dr. Lapp has developed three tests a supplement must pass before he recommends it.
- It must be safe.
- There must be a scientific basis for its use.
- It must produce a positive effect in at least 50% of people who use it.
He has found 10 supplements that qualify.
So many choices! Dr. Lapp has produced a basic and affordable supplement plan for ME/CFS and FM
The first six described below are useful for many people with CFS or FM. The first five together cost together about $15 a month and the sixth about $20 a month (2009 prices). The remainder are used for specific purposes; he recommends them for only some patients.
Dr. Lapp stresses that there is no cure so far for either CFS or FM, and supplements are not the heart of treatment. But they may be used to optimize health and may produce modest improvement in some symptoms.
As he has written, the most important treatment of CFS and FM is acceptance of the illness and adaptation to it by means of lifestyle change, which focuses on pacing and includes other adjustments such as stress management.
• Dr. Lapp advises that people try only one new supplement at a time, keeping it if it works and dropping it if it is ineffective.
• He also suggests stopping the use of a supplement for several weeks once a year
* * * *
1. Multi-vitamin
To optimize overall health, he recommends using a multi-vitamin that includes B complex, folate, vitamin D, calcium and magnesium.
2. Vitamin B-12
He recommends the injectible form and says that up to 80% of people with CFS/ FM who use it experience a 10% to 15% energy boost. If injectible B12 is not an option, consider oral methyl-cobalamin at 1000 to 5000 mcg daily
[Note also that clinical research indicates sublingual (under the tongue) tablets delivering B-12 directly into the bloodstream can be equally effective.(1)]
Dr. Lapp finds most people with ME/CFS have low Vit D3 levels. Vit D3 can relieve pain and stiffness
3. Vitamin D3
He has found that virtually all his patients have low levels and recommends 2,000 units per day. D3 reduces pain and morning stiffness. Also, it protects against stroke, heart attack and breast cancer, and promotes the absorption of calcium. (Note: Vitamin D is lipid soluble, which means it dissolves in fat. Heavier individuals will require more Vitamin D3, perhaps 4000-6000 units.)
4 & 5. Calcium and Magnesium
The recommended calcium dosage is 1,000 mg to 1,500 mg daily, the amount available in two Tums tablets. The magnesium dosage he recommends is 500-750 mg daily, but magnesium is inappropriate for those with kidney disease and may cause diarrhea. People often take these two together in a calcium-magnesium tablet.
6. D-Ribose
This is a naturally-occurring sugar used in cell metabolism and the production of energy. It is metabolized differently from table sugar and has little effect on blood sugar levels or diabetes. The dose is 5000 mg three times daily for two weeks, then 5000 mg twice daily. Results are usually obvious within three weeks.
7. NADH
This substance, often used with the next item, helps increase ATP in mitochondria. It takes three to six months to produce a response and the response is often subtle. It is available in 10, 20, and 25 mg sizes.
8. Acetyl-carnitine
Use Acetyl-l-Carnitine in combination with NADH to possibly increase your energy
This supplement is often used with NADH to increase energy production. Since acetyl-carnitine is frequently low in brain tissue, many believe that supplementation may improve cognition. Dr. Lapp recommends a dosage of 1,000 mg twice a day.
9. DHEA
This supplement can help with energy level and libido. It is not needed if a person is already taking estrogen and/or testosterone via hormone replacement therapy. Side effects may include oily skin, acne and excessive hair growth. Dr. Lapp recommends 25 to 50 mg daily for women and 50 to 100 mg for men.
DHEA could increase libido!
10. Lysine
This supplement [aka L-lysine] can be used to reduce the frequency and severity of herpetic mouth ulcers (mouth sores).The recommended dosage is 1,000 to 2,000 mg per day.
Caution
Before you start taking a supplement, check with your doctor. She can take into account your individual situation, something not possible with the general advice offered in this article.
* Dr. Bruce Campbell, PhD, is a leading ME/CFS & FM educator, and is himself an ME/CFS patient who slowly achieved improved health more than a decade ago by researching and practicing an ongoing regimen of significant lifestyle changes. His website (www.cfidsselfhelp.org) offers a searchable library with scores of free articles on coping with ME/CFS and fibromyalgia, as well as low-cost online self help courses in moderated discussion group format.
These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure, or prevent any disease.
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Prohealth is featuring Health Rising this month in its Making A Difference campaign. Buying Prohealth supplements this month through this link will support Health Rising.
Thanks, Cort. Appreciate this list, the links, and especially the criteria for a supplement. I am so tired of all the questionable treatments and practices. Much appreciated.
Thanks Susan, I’m appreciative of Bruce getting this summary together simply because its such a complicated field 🙂
Bruce Campbell has done a lot of us a great favor by taking the methodology of his recovery and sharing it on his extensive free library of members contributions on his website and the very inexpensive books, audio and courses at http://www.cfsselfhelp.org/ He has run his selfhelp courses since the 1990s
Learning from Bruce Campbell’s course how to manage my lifestyle and activities to remain under my aerobic threshold has made a great improvement in my virally caused illness. Although I seem to be far too easily have problems with viral infections, I’m able to use the techniques of Bruce’s classes to manage to again inprove and become nearly symptom free. Workwell Foundations description of a “blunted energy system” that can be improved by not using cardiovascular techniques but rather strengthening and suppling seems to be working for me.
I wish every one who struggles with this dreadful illness the best of luck in finding what works for them, and to remain as symptom free as possible.
Thanx from me as well! I just started some new supplements recently and think I had a bad reaction to “Stress-Tame” which contains CA poppy~I’ve read that it can interfere with Cymbalta, which I take…I always have to be careful as I seem to over-react to so many things. I’m taking at least 1/2 of the supps you recommend already…I know it takes time. I also tried a new “Sleep” formula which contains GABA and several herbs~doesn’t seem to help me get to sleep any better and makes me groggy the next AM if I take much…I can’t take anything with much melatonin as that seems to increase the depression. Does it interfere with seratonin as well?
love this article
I was hoping to read it and question my doc about some of my supplements, but no, seems he is getting it right 😉
I do take a lot more, but they are intoduced over time as I report a symptom, and they do impact on it, reducing or curing it. But I am so sick of the amount of ‘stuff’ and the time and effort and concentration to get this all right. And the fear that this is forever :/ first time I have voiced that 🙁
I was interested in the comment about stopping supplements for a week a year. Could this be exanded upon please?
thanks for the article
🙂
The best supplement website there is, IMO, is http://www.examine.com. They don’t sell anything but a downloadable copy of their guide, cheap, and with lifetime updates, all evidence based from journal articles. The folks are quite research oriented, in a number of dsiciplines, now headed by an M.D. You can actually get all of the info free at their site online but have to dig a bit. They do not list fibro as a specific disorder, though I just asked them to consider it. They do mention it in passing in a few places, though, with COQ10 being a possible supplement. I haven’t tried it yet, have been trying to set up Xi gong which, along with tai chi, has solid evidence for improving fibro symptoms if practiced frequently.
Dr. Lapp’s supplement recos above do not state what target symptoms he is trying to alleviate with each.
Hi
I have some experience with Qi Gong myself; been practising for about one year and a half. Started with the easy stuff, Shibashi, very enjoyable. Am now doing static Qi Gong (zhan zhuang), try to do it at least five days a week, for a minimun of 20 minutes. That is quite a challenge!
Benefits: helped me with pain reduction ( about 20% less), dizziness, headache (almost completely gone), tension inside my head, heart palpitations.
I do the exercises on my own, since I’m housebound most of the days, of course, if you can attend classes, you can benefit from the group Qi.
Good luck with it!!
Ria
Thanks for passing the info on. 🙂
Examine.com – that’s us!
Any questions Cort, don’t hesitate in asking
Several of these supplements have made me worse especially D3. I don’t think just because you are low in it means you should take it, there could be a reason why your body is keeping it low.
If you get worse with vitamin D supplements, have your doctor check your calcitriol levels. If they are high, you might have an infection(s). Many Lyme and other chronically infected patients have this scenario. This is the basis of the Marshall Protocol, which I don’t necessarily agree with, but he is on to something. The Chronic Illness Recovery website also has a lot of information on this subject.
Ria,
Many thanks for post, yes, internal Xi gong is the one with good research thus far, from Dalhousie University. Their most adept and committed folks in a followup study who made it to Level 2 achieved 70% pain reduction (as I remember) but they practiced about an hour per day. Tough to find xi gong here but if desperate…Youtube!
It’s odd that one can be a patient for 10 years and he doesn’t mention three quarters of the list, just prescribes pain medicine and whatnot.
It’s on the handout you get the first day. Instruction sheet and on the CD
David Mason, these instructions are on the handout form you get the first day. The Instruction sheet is also on the CD, minus the individualized hand written notes that were handed to you before you left. You may have been in shock as you left your 1st appointment, as I was, and misplaced it when you got home.
David Mason, these instructions are on the handout form you get the first day. The Instruction sheet is also on the CD, minus the individualized hand written notes that were handed to you before you left.
In response to MK Gilbert above:
For sleep I have two suggestions and an observation
If you are reacting to melatonin you may have gut disbiosis. I got arthritis from 5HTP ( a precursor to melatonin) which went away when I stopped it.
1. My daughter’s physician gives priority to sleep and doubles up with a pharma prescription like nitrazopam AND 1000 mg of velarian as they work in different ways.
2. Have you tried Kava? It is very good for anxiety and sleep. It is the drug of choice for the whole of the Pacific, and is used regularly in all Polynesian cultures including in brewed form after church to unwind.
Kava was used a lot a few years ago when it was shown to be as effective as prozac-type drugs. it then fell out of favour as liver problems showed up. It turned out there had been a rush into the Pacific by supplement companies who had got greedy and used the stem and leaves of the original plant as well as the traditional root. However when it is prepared in the traditional way and with traditional harvest it is a super safe herb to relieve anxiety and sleeplessness. It can still be purchased from good honest companies, such as Thompsons or New Zealand and in this form is quite safe to use.
Good luck and good sleep!
Phillida
I have stated this over and over again-but has anyone here tried a CPAP sleep machine?
I have been on one now for about 7 mo and had it titered correctly by a sleep specialist. I took Melatonin and 5 HTP for years for sleep. Started having Fibro pain and heart palpitations had to quit both. The went to 5 mg Valium once nightly at bedtimes as anything else knocks me out for the whole next day. I have stated this before , but the CPAC machine has saved my life . I was also having Rapid strong Heartbeats as I was waking during the night 30-40 times and stopping breathing.
I actually have mild Apnea but when I do have the episodes it is dangerous.
Hope some of you will think about at least being evaluated for Sleep Apnea. There are many kinds and I am the one that finally realized this may be one of my problems and ask for a study.
To do an accurate study you need to go to an overnight sleep study in a hospital or clinic.
Mine was not done right the first time, but the 2nd one was evaluated in an overnight setting.
I have quicker recovery with any onset of symptoms of CFS Fibro and OI.
Still have to rest-trying to do the pacing rests suggested by the Stanford Dr.
Incidentally my sleep specialist says 4 hrs is not going to give you what you need with the CPAP machine. You need 7-8 hrs. As soon as I increased the time, I immediately had more energy.
Hard to get used to-but worth it.
Indeed. check out Carole’s story below; it’s amazing what a change a CPAP machine made for her (and possibly could make for you).
http://www.cortjohnson.org/blog/2013/07/31/when-its-not-all-me-cfs-fm-how-a-sleep-study-turned-one-chronic-fatigue-syndrome-patients-life-around/
Cort- Forgot to say- Thank you for a great website and for all your effort in helping people with this CRAZY MALADY. You are our HERO.
Carole
Thanks Carole. I hope we will all figure this out someday 🙂
ME is a heterogeneous disease, and since research have shown that healthy people should avoid several mainstream supplements like multivitamins, vitamin D and omega 3, I’m certain that many patients ought to avoid unnecessary supplements as well – unless they have a specific prescription and recommendation from their doctors. Many eat over-the-counter supplements like harmless candy, but search PubMed and you’ll see that it’s far from the truth. Take ONLY supplements that your doctor has verified by blood tests that you really need!
I have a little different perspective. The research that gets published is heavily influenced by the pharma industry IMO. You don’t see too many vitamin ads in medical journals, I should think. So one has to take that into account when seeing negative studies on relatively safe supplements. (As Durk Pearson & Sandy Shaw wrote in their book suggesting megadoses of a fair number of vitamins and supplements, nothing is completely safe.) How do you verify by blood test that you personally need a supplement? The normal range is set by some average, some guesstimate of what average people need. It doesn’t tell you what your body needs, because your body is biochemically unique. I was surprised by the comment from one who said vitamin D made him worse. For me it has been all positive. That doesn’t mean he’s wrong and I’m right. It means we are biochemically different. BTW, I did have my D checked with a blood test, and it was right in the moderately high normal range where I think it ought to be. And I’m taking 4000 IU daily, more for brief periods if I have an acute infection.
I think the latest news item I saw that opposed multivitamin supplements was presented on the news as follows: People should be getting their nutrients by eating nutritious food, not with pills. As far as it goes, I agree with that. But most people are not that careful about the nutritional content of their diet, and a good supplement is better than nothing. Second best, to be sure. Best of all would be to eat a very nutritious diet (perhaps close to Doctor Wahls’ anti-MS mitochondria- and brain-enhancing diet) and add some supplements to optimize your own body’s needs. Figuring that out is going to be mostly trial and error, I think.
I am personally taking over 25 grams of vitamin C daily. Do I “need” that much? If I want to be able to function mentally at all, yes it seems that I do.
PM,
I’m not sure how much research you actually do yourself. I am a trained researcher and have done a great deal of work in this particular topic for my own health, and that of my husband, if I read something that says “research says” and before taking anything that is recommended by a doctor or a layperson.
What many people don’t know is that doctors coming out of med school have had very little training in nutrition at all. In addition, almost all of their medical training and textbooks are sponsored by pharmaceutical companies – a major conflict of interest. Media is also controlled by approximately three major corporations which own other corporations, including pharmaceutical companies, so if you read an article that says research shows something, it’s a good idea to get the name of the study, read it, and come to your own conclusion – not just what the researcher says is the conclusion. And finally, remember,”FDA approved” means little. They FDA hires people from the pharmaceutical industry constantly, and they are, in return hired by the pharmaceutical industry when they leave the FDA – another major conflict of interest.
If you don’t feel comfortable interpreting the data, there might be a friend or family member who can. Anyone with a PhD., M.A. or M.S. in a health or science related field can. I do research for people as a consultant. You need to be careful because the researchers can easily have financial conflicts forcing them to conclude what the company paying them wants them to say. They report it, but you have to look for it. Often it is in their interest to downplay nutritional supplements.
The point of all this is that it is important to be careful to do your own work for your own needs. In my case, everything recommended is part of my regimen and I actually use more. Am I popping pills like candy? NO! I research each supplement, getting the why, how, possible reactions, possible interactions, amounts for efficacy (many supplements are taken in too low a dose), etc.
By the way, I’ve recently seen a study saying that more than 3g of fish oil per day can cause negative effects in some people. I take one with each meal, as does my husband, also disabled, they were recommended by a specialist in FM and ME as were quite a few of the supplements I take. The benefit has been tremendous!
Find the highest quality, and if possible mix supplements that interact together to assist in absorption and efficacy. Again, to do this , you have to do your own research. If you don’t know how to do it, ask a person who is trained or take a research class if you’re up to it. There may also be some good websites on it.
Hope this helps.
Myalgic Encephalomyelitis G93.3, is not heterogeneous. CFS is. Other points taken though. Supplements taken at high doses, in a person without deficiency, can cause deficiency of other vitamins and minerals and also have side effects. Some people, especially in the absence of any effective treatment and access to anitvirals and immune modulators, or those who don’t tolerate medications well, will think that it’s worth a try.
I’m confident in using the word heterogeneous (or diverse) when talking about ICD-10 G93.3 Myalgic encephalomyelitis because there are not one distinct etiological causes (virus, bacteria, parasites, other) behind the illness and because not one distinct treatment will work for everybody – even amongst patients with identical symptoms. We have the same illness but it’s still diverse.
I agree with the rest of your reply MsJustice, and can see why some patients might want to try experimenting with supplements. But vitamins and supplements are not automatically safe in every dose for everybody at all times just because they are «natural» and over-the-counter. Speak with your doctor before adding supplements to your medical regime, even «harmless» stuff like a daily multivitamin pill.
I ingested my multivitamin with iron and my calcium-supplement simultaneously for years, not realizing that iron and calcium inhibit the absorption of each other – resulting in a steady increase in my iron- and calcium-deficiency. Harmless supplements doing harm. I now check and double check every supplement with my doctor beforehand – I want to get better, not worse!
Thank you for these comments. I’d guess I really need to run my supplements through my pharmacist. I rely on vitamins and minerals provided by Dr. Sarah Myhill, a UK ME specialist with a free and large informative website. I’d guess she will have reserched all this thoroughly, but will now ascertain.
I wonder how long a gap we need to make before taking supplements that might be counter productive when taken together. I wonder if it also depends on our gut microbiome, or stomach digestive juices?
Thanks Cort,
Always useful to get some clarity about Supplements. These appear to be well recognized & discussed within the CFS/ME community.
I have been a sufferer from CFS for 10 years & personally taken many of these supplements. I still take some to optimize my health but I have found these to be supportive not a cure CFS/ME. However, they have improved the quality of my life and I am sure would benefit others too.
Howard
Just a word on the DHEA suppliment. In November 2013, I was told that my DHEA showed up low. A suppliment was recommended. If I had read more about it first, I would have known about the side effects that Dr. Lapp points out.
I wound up with horrible acne. Went to a dermatologist, who prescribed three different topical medicines to fight it with. Of course they did not work, since I was still taking the DHEA! It was my rheumatologist who knew the DHEA was causing the issue.
Stopped the suppliment last week and am seeing slow improvement.
On some other suppliments I have been looking into, (CoQ10, Red Marine Algae and Holy Basil), I made sure to find out as much about them as possible and will be introducing them into my body one at a time with a week inbetween. Hoping for good results!
Hi, I find that monolaurin made from coconut milk is helpful (it seemed to make my chronic epstein barr virus go dormant before tho I still have CFS and Fibro)…also rhodiola rosea and neem, antioxidants, are helpful. I appreciate this article and journal, thank you. Peace, Nancy
My only question is: “What kind of crappy vitamins is Dr Campbell taking if he thinks the first 5 (even at 2009 prices) combined cost $15.00?” For just the multivitamin I’ve always paid more than $15.00. I think he is off on the prices.
I am wondering if you can take CO Q10 and NADH. If anyone knows or can refer me to a helpful website that would be great.
The supplements I bought at Walmart didn’t seem to have any positive effect. Not all testing companies are created equal either. Was hoping for something more speciic… i.e. Are there any supplement companies that make products specifically for people with chronic diseases? Are there labs that are recommended for specific tests for ME/CFS?