Mending Us
Mendus is the brainchild of Joshua Grant, a neuroscientist with chronic fatigue syndrome (ME/CFS). Joshua looked around and saw a mountain of possible treatments with nothing other anecdotal evidence to recommend them. Given that he couldn’t expect clinical trials to assess how effective even a fraction of them were, the future looked like a lot of expensive trial and error.
Mendus – the quantified self website for entire communities
There had, he thought, to be a better way, and so he created a platform called Mendus that patient communities can use to produce their own clinical trials. Mendus takes off on the “quantified-self” movement in which individuals use devices that measure activity levels, heart rate, heart rate variability, sleep, etc. to monitor their personal health. MENDUS takes that movement to the next level to produce the “quantified-community” projects that allow entire communities to get statistically relevant information on treatment possibilities.
Is Mendus producing full-fledged clinical trials? Mendus can, in fact, produce placebo-controlled, double blinded trials (see below) but they’re not quite full-fledged clinical trials. They do, however, produce the best data we’re likely to ever get for most of the treatments ME/CFS and FM patients try.
- Check out a Huffington Post article on Mendus
When enough people enter into a trial it becomes active. The trials essentially never end; as new people enter a trial and provide new data the data stream becomes more robust and gets re-analyzed. Twelve ME/CFS and FM trials containing over 300 patients are now active on Mendus.
- Learn more about Mendus and how to start your own clinical trial.
The MitoQ Chronic Fatigue Syndrome and Fibromyalgia (FM) Trial
With 144 people contributing data the MitoQ ME/CFS and FM study is the largest MENDUS trial to date. MitoQ is an amped up form of CoQ10, an essential mitochondrial factor and antioxidant. Several studies also suggest it may be helpful in ME/CFS or FM.
MitoQ is an enhanced form of CoQ10 that is designed to get more CoQ10 into the mitochondria
CoQ10’s uptake rate into the mitochondria, however, is low. Mitoquinone or ‘MitoQ’ is a form of ubiquinone (CoQ10) which has been engineered for significantly better mitochondrial uptake. It has the potential to be many times more effective than standard CoQ10.
Studies suggest that mitochondrial problems may be present in chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM). Reduced blood CoQ10 levels, for instance, have been found several times in FM.
The Study
Via a blog on Health Rising MitoQ Ltd offered a free, 6-week supply of MitoQ (20 mgs/day) plus a visually identical placebo pill to ME/CFS and FM patients. The resulting randomized, blinded, placebo-controlled, crossover trials involved 47 patients with fibromyalgia and 51 with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). An additional 44 people joined the study by purchasing MitoQ t at a reduced rate (43 ME/CFS, 1 FM). They took a lower dose (10 mgs/day)
All groups were predominantly female (FM: 82%, ME/CFS: 69%, Group 3: 94%). The trial participants reported they had been diagnosed by a doctor or were self-diagnosed.
At several time points during the 6-week trial the participants completed online assessments of fatigue, pain, sleep quality, mental clarity, gastrointestinal issues, depression and overall wellbeing, along with an estimate of how active they had been. Three cognitive tests were also assessed: digit span (working memory), polygons (concentration) and verbal reasoning. These were performed at Cambridge Brain Science (cambridgebrainsciences.com) and scores were entered manually at Mendus.org.
Results
The fibromyalgia arm reported significant pain relief.
The FM patient reported that 6 weeks of MitoQ led to decreases in pain of 33% and 24% for the parallel groups analysis and crossover analysis respectively. Increases in working memory capacity were also observed (13% and 10% respectively; amounting to nearly a 1-digit improvement in memory).
The ME/CFS group did not fare so well; a parallel analysis actually found reduced sleep quality in ME/CFS group compared to the placebo group (19%).
Lastly, the open label, non-placebo-controlled group, which was composed mostly of ME/CFS patients showed significant increases in energy (26% and 32%), sleep quality (17% and 35%), mental clarity (18% and 51%), activity (54% and 86%) and verbal reasoning (19% and 30%) at 6 weeks and 3 months and a modest reduction in pain at 6 months.
Discussion
The Fibromyalgia Group
This is the fourth study to find that CoQ10 may be helpful in reducing pain in fibromyalgia, and the first to suggest it may have modest effects on cognition. A placebo-controlled study found that CoQ10 treatment was associated with reduced levels of IL-1B, a pro-inflammatory cytokine believed to play a critical role in producing hypersensitivity pain states. CoQ10 was associated with reduced pain, fatigue and morning tiredness in FM in another study.
The Chronic Fatigue Syndrome (ME/CFS) Group
CoQ10 bombed out in the ME/CFS group. In fact, MitoQ was associated with a slightly reduced quality of sleep. Given reports of low CoQ10 levels and ATP production in ME/CFS the findings were somewhat surprising. It should be noted, though, that a Spanish group which has consistently, found evidence of some mitochondrial problems in FM, failed to find them in ME/CFS. The authors suggested that the presence/absence of mitochondrial dysfunction could distinguish the two diseases.
(Mitochondrial problems are a hot topic in both ME/CFS and FM, but it should be noted that mitochondria are very complex and mitochondrial problems do not necessarily mean that mitochondrial supplements such as CoQ10, D-ribose, etc. will be helpful. The kinds of mitochondrial issues Dr Naviaux has found in ME/CFS, for instance, are different than those which are treated by supplements such as D-Ribose.)
It’s possible, as well, that if mitochondrial issues are present in ME/CFS, they need more than MitoQ to be resolved. The one successful CoQ10 ME/CFS trial used CoQ10 in combination with NADH. NADH, then, could be a missing co-factor.
The Surprise
The add-on (non-placebo controlled) group made up almost completely of people with ME/CFS was the big surprise. In contrast to the placebo controlled ME/CFS arm – which reported no significantly positive results – this group reported almost across the board benefits including increases in energy (26-32%), sleep quality, mental clarity, verbal reasoning and pain.
Did a strong placebo effect account for the big boosts the uncontrolled group reported?
The notable boost this group received could reflect a very robust placebo effect that was accentuated by the fact that this group actually knew they were receiving MitoQ. That’s in contrast to the placebo-controlled groups where the participants never knew whether they were taking a placebo or not. The knowledge that they were taking a potentially very powerful mitochondrial supplement could have provided a substantial boost.
(The placebo effect did show up in the controlled section of the trial; pain, gastrointestinal problems, concentration and verbal reasoning all improved in both the placebo and MitoQ ME/CFS groups. Notice that the add-on group experienced improvements in different symptoms…)
Sometimes less is more, as well. The benefits seen in the uncontrolled group could possibly reflect the lower dosages (10 mgs/day vs 20mgs/day) they were taking. That’s an interesting possibility given the reduced sleep quality seen in the placebo controlled group (which took twice as much MitoQ).
Conclusions
The Mendus study validated past study results in fibromyalgia; CoQ10, in this case in the form of the MitoQ, did significantly reduce pain levels and modestly increased working memory. The evidence for CoQ10’s usefulness in fibromyalgia is increasing.
The strange dysjunction in the results between the placebo-controlled and uncontrolled ME/CFS patients, on the other hand, left only questions. Does CoQ10 just not work in ME/CFS? Or was a vital cofactor missing? Or is less more with regards to CoQ10 dosing and ME/CFS?
Was a strong placebo effect responsible for the surprisingly strong benefits seen in the uncontrolled group or did something else occur?
Kudos to Joshua Grant for putting this trial together, to MitoQ for being willing to put their product on the line in such a visible way and to all who participated.
I found Ubiquinol far more effective for my fatigue than uniquinone .
MitoQ, like CoQ10, is a methyl donor. With the COMT++ or COMT+- genetic variants, one cannot break down methyl donors easily, hence the insomnia. I knew I’d never think of trying 20 mg. Right now doing well with 5mg and will cautiously work toward 10mg. Amy Yasko’s work is essential for understanding SNPS and methyl tolerance.
Thanks Avis. Good luck with your protocol
Thanks
So What are we getting when we use CoQ10 or Ubiquinol in 100 mg dosages? I have noticed in mine even if I take a 100 mg capsule of Ubiquional I am not able to sleep at night -even if I take in the am. Are the other lower dosages available only by rx or compound?
I don’t know but that’s an interesting finding given that sleep quality was effected in the higher dose group.
Hi Carole,
Sorry if this is a dupe–have tried to send this 2 times. Not sure it went through. Pure Encapsulations makes Ubiquinol QH 50. So that’s a possibility, or 100 every other day. Yes, methyl donors in the AM only. And if we think of having a specific, gene-related ability to tolerate methyl donors, and we all need them, we can be more selective about which ones are in our protocol and all of those can be the lowest made. Other methyl donors include SAMe, curcumin, msm, dmg, tmg, methyl b12 (so we use only hydroxycobalamin which will combine with MTHFR and get methylated for the cycle), methyltetrahydrofolate (MTHFR), melatonin, caffeine, theanine, quercetin, carnitine, idebenone, green tea.
Yes I experience the same thing. Plus anything over 100mg I get a headache..
Anyone here with FM have luck with regular, hopefully quality, COQ10? I tried 100 mg for a while a few years ago, no pain decrease. I’m in my third week of 300 mg/day this time around, will go at least six weeks to try it. No effects of any kind noted yet.
MitoQ might help. It packs a lot of punch into those little 10-20 mg tablets.
Hi Cort: great information as usual. Is MitoQ available for purchase now? And if so, from whom and at what cost? Is it compatible with other drugs for Fibro like Cymbalta?
On another note, I would like to donate to Health Rising. Is the monthly commitment option automatically taken from my checking account (preferable) or would I have to remember to submit it each month?
Thanks Dianne,
Prohealth carries MitoQ – https://www.prohealth.com/shop/product.cfm?product__code=N0732&B1=MSNN0732&utm_source=bing&utm_medium=cpc&utm_campaign=Immune%20Support%20%2F%20Detox%20%2F%20Digestion&utm_term=%2BMitoQ&utm_content=MitoQ. and so does Amazon
As to compatability – I’ve never heard of MitoQ or CoQ10 being incompatible with FM drugs but don’t have any solid information on that.
Of course we would love a donation. If you open a paypal account paypal will automatically deduct a donation from your checking account and send it to us if you use the Subscribe button on the right hand side of the page. Your bank may also have a Bill Pay feature in which you can have a check sent every month. Thanks for asking 🙂
Hi Steve, For years I took up to 400 mgs daily for both FM/CVS and there was no difference. My multi-vitamin contains a small amount and so do a few other supplements I use, so I rely on that now. Good luck to you in this attempt!
They are studying 10 and 20 MG therapy
Hi Steve
I would recommend Bio-Quinone CoQ10 Gold from Pharma Nord (I switched myself and swear by my daily 200mg). It has the most extensive research profile of any CoQ10 product (stating 75 human clinical trials). Including positive results on fibromyalgia, cardiovascular mortality, breast cancer, neurological health. It has been tested continuously for a couple of decades. Absorption studies show that it is most effective if taking no more than 100mg at a time, rather spacing out doses.
Good luck
WOW, I just looked up the cost on Amazon and my goodness! I spent a lot of time and money on supplements and I saw no improvement. Even ubiquinol and large doses of Magnesium (always brought up in discussions about Fibromyalgia and supplementation) again didn’t help. I even found a doctor who was willing to give me high dose infusions of Magnesium…nothing.
It is, however, great to hear that there are people who respond to supplements and have success with them. I continue to take a Multi vit, Flax Seed Oil (Fibro causes constant flares in my eyes) and B12 for Pernicious Anemia.
Hi Martinigal
I guess it depends what you are looking for. I have wasted a lot of money on cheaper supplements that didn’t do anything for me (probably because my body couldn’t absorb it). I would rather take supplements where I can feel the effect. My naturopathic doc gave me a discount code for use on the manufacturer website for 15% off. This means I can buy the 150 pack for less than $94, which is $1.24/day for two softgels (my aunt ordered with it too from their website with code xywellness, maybe it works for you?). Since I no longer get coffee at coffeeshops before work in the mornings because I don’t need a cup in the mornings any more, I actually save quite a bit every day since my lattes cost me $3+.
But, like you said, if you have spent a lot of money and it doesn’t work, I don’t blame you. I literally feel the difference with or without it. It’s an easy choice for me.
My functional nutritionist just recommended I add ground French Walnut (in a capsule) to my routine as it helps metabolize the ubiquinol (which I too find the best form of CoQ10). Does seem to help a lot. Sorry not to be able to get up and look up exact name of French Walnut, but probably close enough to figure out. Could be placebo effect, but who cares?
Barbara, do you mean French Oak?
I have been on CoQ10 for perhaps 16 years. Initially it was ubiquinone but in the last year I have changed to ubiquinol but because of the expense and its reported effectiveness I have halved my daily dose.
I have never found any help with energy from CoQ10 but I immediately found help with sleeping. In the past when I have decreased my intake (because pill strengths changed) I found my sleep became poor; at other times I have increased it and found improved sleep. My experience seems to be the opposite of what many of you are saying in regards to CoQ10 making you sleep poorly.
I actually enrolled in the trial to participate the non-placebe-controlled group, but did not report the results (for reasons unrelated to the trial). HOWEVER, I found MitoQ extremely helpful; it’s the first drug to keep me from crashing.
Why all the speculation about placebo effect with MitoQ when it’s been found previously that placebo effect probably does not play any significant role in ME/CFS? I have tried other stuff with great hopes, also conventional CoQ10 products, to no avail. Not to mention that I didn’t get any benefit from LDN when starting with too high a doze, yet my hopes and belief in LDN were MUCH higher than in MitoQ. I’m taking MitoQ 10 mg /day – whereas the placebe-controlled group took 20 mg.
Maybe less really is more.
Maybe less is more..You never know. It’s happened before. Thanks for the report and congrats on the process.
I agree that many of us have fruitlessly tried so many things that one would think that any placebo effects would have diminished a long time ago.
I wasn’t part of the trial but I’ve tried all three in varying amounts – ubiquinol, ubiquinone and mitoQ – and found that for me Ubiquinol in quite high doses works by *far* the best of the three. It doesn’t give me insomnia or anything. I did find that both times I switched from Ubiquinol to MitoQ to test it I crashed quite badly :/
I’m also uncertain amount Mendus’s use of the Cambridge Brain Sciences tests for this purpose – I found that my daily scores varied *enormously* in the tests they’re using, from significantly below average to significantly above average, even when I did them at the same time each day. I think the between-tests variation of many standard deviations (at least for me) would be enough that using just a few individual measurements for a Mendus project would be entirely useless, sadly.
Thanks Cort for your support, and thanks Ricky for making a point that’s definitely worth looking into. I also wondered about the Cambridge Brain Sciences test results, which did not seem to make much sense. The whole controversy could be with the test: maybe those who knew they were taking MitoQ and found it helpful did the test a few times in a row (you can do that) and reported their “better” results. After all, at least I would want my results to reflect fairly how I was feeling, and I’d probably dismiss negative results as a ‘poor sample’, put them down to lack of concentration, or the like.
The placebe-controlled group, on the other hand, wouldn’t do this because they couldn’t be sure what they were getting.
But Ricky, I recognize that MitoQ will not help all – this variation seems to be characteristic of our illness.
Unfortunately I don’t think that you can take any data away from a uncontrolled study of any type when Fibromyalgia/CFS is concerned.
When I was diagnosed by one of the leading research and diagnostic specialists in Canada I went online to look for groups and other people who were suffering the same malady and I was absolutely floored when I started talking to fellow Fibro sufferers. Once the conversation got to asking how it was they were diagnosed, or by whom, I found that the largest percentage of the people were “self diagnosed” never having had a doctor other than their GP see them and they had convinced themselves that they were suffering from Fibro or CFS.
I don’t think that there is any other affliction where this is so prevalent a phenomenon. By all means go, out into the world of the web and see for yourself but I’m sure that anyone who is a legitimate, diagnosed sufferer, has already experienced this while looking for others that may have beneficial information regarding easing their symptoms.
With this being the case I don’t see how anything can be taken from an uncontrolled study and looked at with a sense of it having any authenticity. When even some of the more “publicized” controlled studies of other new medications seem to have a lack of credible participants who can corroborate the findings or the wild claims of benefit how on earth can you look at any of this as realistic.
This was controlled study in that there was a placebo and both the participants and the researcher were blinded. I get the concern, though, about the fact that some of the participants were self-diagnosed. Perhaps Joshua can weigh in regarding how many of the participants were self-diagnosed, and if he determined if they had a different response.
Hi all,
I’ll try to address each of the issues you’ve raised so far. For the record, we tried to acknowledge the limitations we saw with the study near the end of the discussion section.
The vast majority of individuals reported being diagnosed by a medical practitioner. All of the analyses were run with and without the self-diagnosed folks. There was no difference in the statistics/results so they were left in. This is common practice for that kind of scenario in research (though not necessarily for diagnosis per se).
DM, can you explain more specifically what you mean by the study being uncontrolled? As Cort pointed out it was controlled on many fronts. Not only did we include a placebo condition but we used a ‘within subjects’ design. This means that all participants (in those groups at least) get all conditions. This effectively eliminates the need for a control group as each person serves as their own control (MitoQ vs Placebo). On top of that subjects were blind to who was taking what, when. As was I, who did all the analyses. A great deal of published trials don’t have this level of control, using different people for the different groups.
Also DM, we administer Leonard Jason’s DSQ when people first sign up. There is a comparison of their core symptom severity here (http://www.mendus.org/#!cfs-results/nxgmc). The similarity between our medically diagnosed, self-diagnosed and the SolveCFS cohort is incredible. I’m sure there are many people who are misdiagnosed, but both by self and doctors.
Ricky mentioned the variability of the Cambridge tests over time. Had those tests been done in the lab (which is where they’re from) your variability likely wouldn’t have changed any. As someone else pointed out, those huge fluctuations seem to be part of these disorders. You’re right, it’s not good but the statistics take the variability into account when assessing significance. What is more problematic is what Tiina followed up with. If people intentionally either manipulated their scores or ran the tests until the got the result they wanted. It could happen, there’s no denying it. We gave explicit directions to do 1 practice round for each test and then record the score of the 2nd but people could have cheated.
Dear DM,
Would it be possible to give me the name of the doctor in Canada? Looking desperately to get a diagnosis on FM/CFS. Thanks
Elizabeth
I was also in the placebo controlled group and found my symptoms were getting so bad that l stopped a week early. I was told later that it was during the stage that l was on the mitoQ I have fibro so results were not in line wit what the results reported.
Thanks for the responses. I now have suggestions to try the third and fourth different brands of Coq10.? Realistically, I think the toll of trying multple incarnations of the same substance will be too much for me, especially as decades of FM personal experience has given me almost no relief of any kind with supplements, or anything else, actually. A recent trial of 3 mg continuous relief melatonin may be the first, allowing me to cut my Ambien dosage but we’ll see.
This is where I get a lot if my supplement info.
http://examine.com/rubric/effects/view/63/Symptoms+of+Fibromyalgia/all/
I have been Dxed with both a severe case of M.E., and Fibro. For me personally, I have tried many different forms of CoQ10, one form of Ubiquinol (Swanson), and was about to buy MitQ online (you can get it directly from them, and I think also on Amazon) but worried about the cost unsubsidized and wanted to wait for these results first. Oddly, the ubiquinol helped me LESS than certain brands of CoQ10. But some brands of CoQ10 did nothing, and some helped me a LOT. Results were inconsistent though – I went from feeling just general better well-being due to increased circulation (I’ll take it), to some days actually feeling a lot of sudden energy, like I could smell again, and like maybe I was going into remission! Sadly, I was never able to recapture that feeling intentionally, and it would only last a few hours at a time, so it might have been influenced by some combination of things I was doing that I never figured out. It’s also possible that these brands changed formulas or have inconsistent quality, which might account for all of our inconsistent results among patients with any supplement, since for US patients all supplements are shockingly completely unregulated until they kill a bunch of people.
I took very large doses though – of the ubiquinol, at one point I was taking 800mg, and it is supposed to be TWICE as effective as CoQ10 so theoretically you should be able to take half the amount. Of CoQ10, two brands I tried that were most effective of all of them were strangely the cheapest ones – CVS brand, and also BulkSupplements, which you can get in powder form in a bag on Amazon. You have to be sure to take fat with them to help absorption – I take it with some high quality nuts and flaxseed oil. I have taken as much as about 2000mg (hard to be sure with the powder, but it might have been even higher). I can’t say if these levels are safe, but I personally had no ill effects, and saw benefit. Most days, just improved sense of well-being, better circulation, and decreased pain. I have since found things that are far more effective for less financial investment, so I continue to take CoQ10 but it is not my main source of defense and so to me isn’t worth bankrupting myself over. I will write up a clear outline of all that I’m doing that has helped soon, but I continue to test things out and tweak things, so info is constantly changing. I was bedridden and severely ill, and now I am finding a HUGE change from the things I’m trying, that feel like… well honestly, a miracle.
Incidentally, thank you Cort for these articles as always – one of the things I have in fact seen benefit with was Hup A, which stemmed from research I did based on a different article you did on Mestinon. Then based on more research of the Hup A, I was led to Ginkgo Biloba, which right now both in combination are making a huge difference (along with the licorice and all the other stuff…). Both Hup A and Ginkgo can have serious consequences if you’re not careful, so I can’t recommend these to people yet without me using myself as a guinea pig a bit more. But WOW, so far I am doing better than I ever thought possible. I will report back when I know more. For me, a central part of the problem is brain inflammation. I would not be surprised if I had severe mitochondrial dysfunction, but I have just never found anything that clearly acted on mitochondria that made a huge difference for me, nor have I had any tests to prove a mitochondrial abnormality. So many of us are just guessing in the dark, based on trial and error. I am glad that after 7 terrible years of aggressive trials, I am finally finding things that work! If I continue to do well, I will write something up with all the details so others hopefully can see their own huge success.
Thanks for all the information Sunshine and congratulations in finding something that’s really helped. That’s inspiring.
I had never heard of hep A before. For other people who are in the same boat here’s some information:
Huperzia serrata is a rare Chinese herb which contains a powerful alkaloid called Huperzine A (Hup A for short). According to studies, Hup A has been proven to be beneficial in protecting the brain, including slowing the progression of Alzheimer’s disease.
“Huperzia serrata is also known as Chinese Club Moss. The active ingredient which is extracted from Huperzia serrata is called huperzine A (or Hup A). In China, this extract has been in use for centuries for a number of conditions, including fever, inflammation, and blood disorders; in the United States, it is available as a natural supplement to aid in memory support.
Medical research and clinical trials have identified huperzine A as a beneficial ingredient in the treatment for diseases and conditions associated with neurodegeneration, such as myasthenia gravis and Alzheimer’s disease. In one recent study, sixty middle-aged and elderly patients with impaired neurological faculties were given either Hup A or a placebo for a period of sixty days. Physiological and psychological testing both before and after treatment was conducted on these patients; researchers found that the patients who were treated with Hup A improved over the course of the study by 43 to 70%. This study also confirmed both the efficacy and the safety of the consumption of Hup A.
Other studies have produced results which indicate that Hup A may have desirable outcomes when used for patients who suffer from Parkinson’s disease.
http://www.brainpower.org/research/huperzia-serrata.html
This is a Hobson’s choice IMO. Hup A and other nootropics are up regulators. If you have brain fog, they might increase your synaptic link system and help your brain fog. If pain is your main problem, though, an up regulator will increase pain and make life even more hell, as several different nootropics did for me. Similarly, a year ago I had to discontinue the antibiotic levofloxacin because it pushed me into jump off the bridge pain. Recently, they issued a black box warning for this med and it is in Cipro family so caveat FM sufferers with sinus infections.
Cort, I still can’t post to the forums due to a year old software glitch that won’t let me reset my password either. You tried to help a while back, didn’t work. If you could reset my PW to anything and send it to me, I would GREATLY appreciate it.
There are so many flavors of ME/CFS/FM – I guess it’s just a guessing game. Thanks for the warning – and I reset your PW to the Forums.
I have had very severe pain since I first became ill 7 years ago. From both the ME, and the Fibro (they are different types of pain, both very extreme). You should not make an assumption that pain was not my problem and thus the Huperzine A was helpful to me. We are not all the same. This patient population is ridiculously heterogeneous, and it is likely that a Dx of CFS/ME and/or FM covers people with at least 8 different diseases and possible deficiencies. Since taking it, and increasing dosage EXTREMELY slowly, I have not noticed any increase in pain, nor would I say I’ve noticed a decrease. It appears to be working on my autonomic system and POTS, which is exactly what I was hoping it would do.
It has had a strange effect on my cognitive dysfunction, improving function in some areas, and worsening it in others. I am still testing that out, and anyway I had not reached my intended dosage of 400mcg yet because I am increasing so slowly. No way to tell yet whether that supposed therapeutic dosage will be worse, or better. It HAS caused other side effects, but they have been bearable so far as long as I increase slowly and allow my body time to adjust. I started at 25mcg and only increase by 25mcg additional, every 3 days to a week or so. I am now up to 300mcg, split into 200mcg in the morning, and 100 at night.
But I am not just taking my own experience into account. For a wide range of people, with a range of medical situations from ME, Fibro, Alzheimer’s, as well as generally healthy people, a large number report improved cognition. I am taking it for the POTS/autonomic issues, and the added Ginkgo Biloba as well as many other things I take help to cognitive side. As I say, maybe when I increase to at least 400mcg/day Huperzine A will help a ton with the brain. Or maybe not. This is one of the reasons I haven’t written an article about my successes yet, because I want to test everything out as much as possible before I make any decisions about it.
So sadly, there is no one-size-fits-all answer for our community. I think though it is worth putting out suggestions that work for some of us, and for all of us to consider careful what types of things tend to work for us personally, or hurt us personally. We have very complicated bodies, and who knows what else is at play besides a general diagnosis of ME/CFS or FM. For me, pain was a serious problem before Huperzine A. Taking it has had no apparent effect on my pain, either to increase or lower it. Thankfully, other things have helped with pain for me, which include LDN (lowered body pain significantly but increased stomach pain), oddly 1500mgday Vitamin B1 (from another of Cort’s articles), and various other things I have done or taken that have helped my sleep, which over time then lowers my pain levels. It really depends what the pain is stemming from. Viral loads like Coxsackie B1-6 need to be dealt with via anti-virals. FM joint pain needs help from the FM side. Chest pain from severe tachycardia needs cardiac help. Bone-crushing ME pain needs cellular intervention, as well as sleep intervention. Pain can refer to too many different types, with different causes, to generalize. Unfortunately I have had all of these types of pain at once, plus other types added on, so I’m grateful to find anything that helps with any single type of pain! 🙂
Boy isn’t this true!
Sunshine. I am desperate to quell my brain inflammation. I have been suffering life altering, severly limiting brain fog for almost a decade now. It has ruined nearly everything in my life. Would it be possible for me to contact you directly about some of your experiments and findings? My email is damonhowe @ gmail . com.
Hi DH,
I’m happy to help, but I’d like to share whatever I can here publicly so others can benefit too! Besides, I am still working out the kinks so don’t know 100% yet what works and what doesn’t.
Here’s what you can do for brain inflammation specifically, without considering other symptoms:
* wrap your skull in ice once a day for about an hour, especially at the point where the head meets the spine at the back of the neck. Put a towel under a cold pack(s) to avoid pain on the skin. Multiple people have tried this after I suggested, and were amazed as I was that it helped general body pain, and sleep pretty significantly. When you have that feverish feeling but don’t actually have a fever, and feel pressure in your head like your brain is pressing against your skull, this is a cue that it’s a good time to apply ice.
* If you can handle the side effects, give Huperzine A a try. Start with only 25mcg, and go up in 25mcg increments every 3 days or so, however long it takes for your body to adjust. If you do not have POTS and your autonomic system works properly, be careful with this. Some people see good effects starting at 100-200mcg/day, but several studies from China say it takes at least 400mcg/day to see any therapeutic effect. I have tried Source Naturals brand, which can be ordered off of Amazon.
*Add Ginkgo Biloba, starting at around 60-90mg, and working your way up to 120 3x/day. You might be able to go higher, but you should see an effect by then. I like BulkSupplements powder, on Amazon, but there should be multiple reputable brands with good reviews to choose from.
*Concentrate on eating an anti-inflammatory diet. This means getting in Omega3 fats in supplement form, with can be in the form of Flaxseed for vegetarians. These fats must be raw, not cooked. Eat a lot of vegetables and fruits that are known to be anti-inflammatory. Add spices like garlic, ginger, and turmeric. Try adding things like pomegranates, goji berries, blueberries, healthy nuts, etc. – foods with a high antioxidant amount are usually helpful. Keep sugar intake on the low side if possible. Watch for things that contain MSG, which also means almost any processed or restaurant food – they won’t call it MSG, it will be something with *yeast in the name, or any pre-made bouillon, even nutritional yeast, etc. – but if you cut out as much processed and restaurant food as possible and make your own (or have someone help you) with “whole” ingredients, you’ll do well. These ingredients have excitotoxins, which can mess up the brain and add to inflammation (as well as cancer, etc.) Pay attention when you eat, and cut out anything that you seem to consistently have a bad reaction to.
* Take breaks and rest throughout the day. A lot of people find a pacing schedule where you are on for 45 minutes or so, and then lay down in a dark quiet room with your eyes closed for equal time, to help a lot. When your brain is feeling tired and overwhelmed, it’s telling you to stop and rest for a while. Don’t overdo exercise, or strain your eyes. Anything that gives you that old feverish, exhausted, confused feeling, is adding to your inflammation.
*Keep a regular sleep schedule, and do the best you can to stay calm and relaxed before bed. Meditate, and do light yoga if you’re physically able, every day. Stress management, and increasing your blood circulation without stressing your body too much physically, are very important for brain inflammation.
*Consider adding herbal supplements to help you lower stress if you have trouble doing it on your own, especially to sleep. Deep sleep is the best medicine you will ever get. If you have a severe problem, you might need a combination of over the counter herbal supplements, like Chamomile or Lemon Balm or Valerian for instance, and low doses of prescription drugs. Usually higher doses don’t seem to help our population much in the long run. I know for me, things like Ambien actually made my sleep problem worse, causing an artificial sleep that was not at all refreshing and more like prescription hallucinations than something restful. We as a patient population tend to need a combination of small doses of things, rather than a lot of just one kind of thing. We don’t usually have any simple answers – only complex, comprehensive answers to a very complex, comprehensive illness.
You should see some kind of difference with one or several of these things. To add more, look up “anti-inflammation diet,” and things like “How to ease brain inflammation.” A lot of the info I get starts from a general internet search, and then branches out from there as I learn more.
I hope something in here helps! For me, my brain inflammation is tied in with heart and endocrine dysfunction, because my autonomic system is all messed up, so I have had to do as much as I can to regulate those systems also. When all are doing a little bit better, my body does a LOT better as a whole!
OH, and I forgot to mention another possible source of brain inflammation help. Taking 100mg of 5-HTP before bed (a precursor to tryptophan) may also target that. I started on this based on a different Cort article a while ago that discussed brain inflammation and the possible help anti-depressants might offer. I know I respond terribly to them personally, so I was looking for other OTC supplements that acted in similar ways to the medications cited in the study.
5-HTP definitely helped me in the brain inflammation dept (I take BRI Nutrition brand, again available on Amazon), but it also has had rough side effects – primarily very vivid and upsetting dreams almost every night. But I have stayed on it, because it seems to be helping my brain overall even though it makes sleep unpleasant. I’m happy to find that the addition of Huperzine A and then Ginkgo Biloba seems to have helped that issue, so now I have abnormally detailed and long, unusually pleasant or neutral dreams (which I myself am not used to, even without the 5-HTP).
Proceed at your own risk. But for me it was worth a try!
Glad to hear it. Unfortunately I didn’t get any response from 5-HTP but Dr. Murphree highly recommends it.
I like the ice idea as a low tech hack that can’t hurt. Wonder if I could place it over my hypothalamus…
Someone is selling a high tech cooling helmet device to induce sleep, not sure if on market yet. Expensive I think.
Yeah, the helmet is probably nicer to look at. But I doubt it works any better. I use an icepack headwrap that I bought on Amazon for like $10, with velcro. Then I put an ice pack or a bag of frozen vegetables on top of that, and the headband part holds it up. Covers every part of my head, and is easily adjustable if certain parts of my skin get sensitive to cold on some days when I am having more trouble with Fibro pain. Usually, cold hurts every other part of my body, so I thought it would hurt my head. But it turns out heat soothes all the rest of me, and cold feels good on my head most days. The blood flows through the area of the neck near the spinal cord, so concentrating there helps to cool the incoming blood, and also to help inflammation in the brain stem which is supposedly our main problem, for people who would fit actual “Myalgic Encephalomyelitis,” which I fit best.. This is all just theory because I have not had appropriate brain imaging, which I think all patients should have access to for a diagnosis and immediate needed medical intervention, but all I can say is it helps me a lot, and has helped other people I recommended it to.
Not much money wasted, and unlikely to cause any real harm. I got the idea from cancer patients using ice helmets for chemo to keep their hair from falling out (and this illness has caused a lot of my hair to fall out too). The way they explained how it worked, it seemed like it could potentially help for inflammation, even caused by the body/illness itself instead of by a medical treatment.
I’ll bet no one who is on this thread has ever had an fMRI for FM or ME. I would love to see what brain hot spots I have but my new PCP was somewhat overwhelmed with my supplements, request for genetic analysis to if my Tramadol is badly metabolized, etc., etc. No one has ever suggested a scan. He ordered the usual comprehensive blood tests that are always normal, was able to talk him into including an AM cortisol blood test and PM saliva test. Dr. Liptan suggests four spaced through the day but he wouldn’t go for it. Every blood test in the prescription form is linked to a specific diagnosis/reason for it. In MA you can’t get a blood test on your own. I wonder if the Trump family hassles this stuff.?
Will look for ice wrap.
I love the idea of wrapping my head in ice. The only thing that has helped with my brain fog is Methadone (don’t judge please). I was in such bad shape and through random interactions found 3 different people who were living normal lives with Fibromyalgia, all were taking Methadone. When I found a 4th I had to try.
It increased my energy like crazy. It also cleared a lot of my brain fog. Unfortunately, your body does acclimate to
these drugs and I won’t increase my dose. So my energy, although much better than it was, isn’t as great as when I first started taking Methadone and that goes for my brain fog as well.
A nice head wrap of ice sounds like it could really help.
Who are ANY of us to judge another? I wonder if Methadone works in a similar way to Low Dose Naltrexone, since both in higher doses are used for heroin addiction? LDN has been found to work for many people in Fibro, and indeed it worked quite well for me. If your system could tolerate it, since there might be several things that help Fibro inflammation, I wonder about trying a rotating schedule of a few different things that help, so you never reach tolerance with any one thing? Like say a period of Methadone, a period of LDN, and a period of anti-inflammatory supplements and Omega3 fat? This is not going to work for everyone, and you need a cooperative doctor as well as a competent compounding pharmacy for the LDN (along with the right dosage), but the concept has worked well for me in other areas, like sleep medicine. The key is to find several different things that KIND OF work, and rotate them out with each other. One other thing that many people have found very helpful with Fibro is yoga (not the athletic kind, but like Kundalini yoga) – apparently it can stimulate the vagus nerve similar to some medications, and help with both inflammation and energy issues, as well as pain. Regardless of how it works, it works for many people with Fibro, especially in combination with other things.
So doing a lot of little things either in combination, or in rotation with each other so they never wear off, might be the key. I had not heard about the Methadone, so I wonder if anyone has ever responded to BOTH that and LDN, and if they work in similar ways?
Sunshine,
I had done a lot of research on LDN and was going to try it. I found a good dosing pharmacist and I don’t know why I didn’t move forward with it. It was years ago and my memory isn’t what it used to be.
I like your idea of rotating several things so you don’t become addicted to any one thing. I’m actually going to try Ketamine infusions in about 2 weeks. I have to leave California because they are way too expensive here. I’ll be going alone so I’m quite anxious (in a bad way) about the travel, but am also anxious in a good way and hope that I am one of the 80% that does indeed respond well and is greatly helped by it.
I could definitely try LDN after my Ketamine treatments, but when it comes to all anti-inflammatory meds, herbal or otherwise, I can’t use them because I’m on blood thinners. That has been very difficult for me in trying to find some relief for the constant inflammation caused my Fibromhyalgia. I especially have trouble with my eyes, a lot of inflammmation, always feeling like I have sand in them. Luckily I can go off and on steroids to help with that and I take flax seed oil, which does seem to help.
I appreciate your attitude about all of this.
Best,
Lorraine
Good luck, Lorraine! It’s true that anti-inflammatory herbs/supplements can be a problem for those who have to be concerned about blood clotting, and also for people who don’t have a way to counter the frequently blood pressure-lowering effects, like licorice and high sodium as I do. I feel lucky to be able to still take all these things. Perhaps one other option for such a person would be supplements like 5-HTP, or one of the anti-depressants that supposedly work in a similar way, which some have had benefit from. I don’t know if they are taken in low doses, like with LDN, but I know 5-HTP can be started at 100mg and might be helpful just at that amount.
Be really careful if you are planning to try cycling medications – make sure that each one you do that with, can be started and stopped at will without complications. And make sure that you are titrating up and down as needed if you have to do that to get on and off them. It can work well, once you have a routine going, but make sure you write it down and follow it carefully, especially if you are having trouble with memory (which is the whole point of all this, of course!).
Also make sure to concentrate on sleep if there is any way to improve there. Reaching deep sleep state will always be the best medicine any of us have, both for brain inflammation, and anything else. It is the only way for our bodies to repair themselves. The less quality sleep you get, the worse the inflammation gets, and the worse pain and other symptoms get – which in turn make sleep even worse. Best of luck trying all these things!
Thanks for publishing this post Cort. I am exploring CoQ10 supplementation. The first brand of uniquinone I took disturbed my sleep so I discontinued after a very short time. I’ve had a similar experience with other things that eventually proved helpful once I found a brand that I tolerated well. I am going to try MitoQ next. I think the take away from the study and responses to the post is that we are all different and results are variable.
Isn’t that the truth
I’ve had ME/CFS for many, many years. I tried MitoQ, on my own, about 5 months before I was officially diagnosed at OMI. I took a single 10mg dose in the am on the first morning. I had severe insomnia that night and moderate insomnia for the next two nights, from just that single dose. A couple of months later I tried it again, but only took 5mg in the am on one day. I had moderate to severe insomnia on the first night again, which tapered off over the next two nights. I do take Jarrow Ubiquinol 200mg a day and it doesn’t give me insomnia. I guess MitoQ is not for me — just my own personal experience.
I was excited to trial co q10 and discovered it gives me a relapse even though my bloods suggest I am low in it.
Just to add a caution. I took 5-htp at 50 mg. a day for about a year. My doctor ordered a seratonin test and discovered my levels were 6 TIMES the highest range number. So I tapered off then stopped the 5-htp. My levels finally came down to a normal range. Oddly, I had no symptoms of high serotonin. And also, I was part of the MitoQ trials, one of the add on patients that purchased our own at a discount. I had to drop out as I started having increased insomnia and nausea. I can tolerate Coq10 but not MitoQ.
The “less is more” idea should be investigated. Coenzyme Q10 is the only supplement that works for me. It gives me more energy but does not reduce pain. It literally feels like my body can make more ATP. I take 100 mg when I need to do something extra. When I ask other people with CFS about trying coenzyme Q10, usually they have taken higher doses. It is a bit strange that I haven’t heard from anyone else with CFS for whom coenzyme Q10 works.
I first heard of Hup A as a supplement for POTS sufferers like myself. However when I looked further into its properties it is a vasodilator which seems very odd to me that it is recommended for POTS where we have too loose blood vessels. Therefore it surely would make us worse.
It would definitely cause me huge problems because every vasodilator herb I have taken and that has been many they all cause massive, daily migraines until I stop them.
I know there are different forms of POTs and mine is definitely from a reaction to too much adrenaline so maybe its ok for others with a different form.
I heard recently that coq10 supplementation can change the results of a tilt table test when looking for POTS… But it was either anecdotal or based on this persons research and I cannot find any sources for this information. I lost the thread and person who wrote it on another forum. And I was wondering if anyone had any recomendations on where to look for a definitive answer to this? My doctors ordered the titl table test for me and I am scheduling soon- but admitedly do not know much about its aplication for POTS and dysautonomia symptoms.
I can’t answer your question scientifically, but I can answer it anecdotally. I was taking large amounts of CoQ10 both times I had tilt table tests. Both of them came out dramatically abnormal anyway. CoQ10 and Ubiquinol have very little effect on my POTS at all. I would say, if you feel that you have the symptoms of POTS in a pronounced way while you are taking your supplement, then it’s probably not having much of an effect and your heart will still show as disordered. If you have a home blood pressure monitor (you can order them on Amazon for like $40), you can test your reaction yourself – take your BP lying down, after standing 1 minute, and after standing 5 or 10 minutes if you can do it that long without fainting.
Even without a reading, you can probably feel for yourself. If, for instance, you frequently faint or almost faint after walking up a flight of stairs, or get very dizzy after standing up, and the longer you stand up the harder it is, you may have problems that will show on a formal test. If taking CoQ10 makes you feel so awesome that you don’t have those problems anymore, then maybe it won’t show up on the test, but you wouldn’t need a diagnosis anymore anyway, because you’d found an effective treatment for your problem. But I kind of doubt that, because CoQ10 is not known to be a cure for POTS. It is a very hard problem to treat.