Maija Haavisto is a Finish writer and Chronic Fatigue Syndrome patient who wrote the massive ME/CFS and FM compendium “Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia“. Maija’s health improved greatly with low dose naltrexone (LDN) and other treatments but pituitary damage in 2012 sent this very productive author reeling. Now she talks about what happened and gives her thoughts on ME/CFS and FM treatments.
Your book “Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia” provided an overview of over 250 ME/CFS and FM treatments six years ago. How have your views of ME/CFS and FM treatments changed in the past six years?
I am even more convinced now that low dose naltrexone (LDN) is “the” CFS/ME drug. Hundreds of Finns have now been using it and 2/3 have a positive experience. Some get minor benefit, others have life-changing experiences. I’m a bit less impressed by antivirals now, but more enthusiastic about beta blockers.
- Check out Health Rising’s Low Dose Naltrexone Fibromyalgia and Chronic Fatigue Syndrome Resource Center
Besides rituximab and GC-maf I don’t think there have been any major new treatments. Had Ampligen been approved the landscape might be very different now. My doctor in Finland is trialing some interesting new treatments that regulate the sympathetic nervous system.
I would say the biggest change in treatment is personalized medicine, like 23andMe, which has increased the importance of non-pharmaceutical treatments, like the various methylation protocol.
I’ve been hoping to update the book, but sadly it hasn’t fit my schedule and finances – I can only afford to write in Finnish now.
But should I update it, I will include a new chapter about verifying your diagnosis is correct. It is so common for people to get a CFS/ME diagnosis when they really have something else – sometimes several illnesses at once. Whether it’s Sjögren’s, Lyme, B12 deficiency, mold illness, adrenal insufficiency or something rarer.
Rituximab wasn’t even a blip on the screen six years ago when you published your book. Now it’s a major interest. What do you think about rituximab?
I included rituximab in the Finnish version of the book which came out in 2010, soon after the first Norwegian study, but I’m not enthusiastic about it, to put it mildly. I think CFS/ME should always be treated with immunostimulants – as pretty much all of the other major CFS/ME treatments are – never immunosuppressants.
The same goes for autoimmune diseases, as well. It goes against the dogma , but then again, first there was a dogma that autoimmune diseases could not even exist (horror autotoxicus) and for a long time the dogma was that they were extremely rare. My most recent medical book (published in Finnish last year) was about the treatment of autoimmune diseases and it presents a lot of evidence to support this idea.
I’m often asked whether I think CFS/ME is an autoimmune disease. Perhaps surprisingly, I don’t have a clear answer for this, but I usually say that treatment-wise, it doesn’t matter. Both are diseases of low immune function, which may in some ways manifest as “overactive immune system”, but it’s really just immune system that doesn’t work right.
Politically, having conclusive proof of autoimmune origin would be helpful, but contrary to what some think, rituximab “working” doesn’t prove CFS/ME is a physical illness – obviously we already have proof of that. Biological immunosuppressants are also being studied in psychiatric illnesses.
What do you think about microglial inhibitors?
It’s a highly promising area, but needs more research to ascertain how promising. Naltrexone is a microglial inhibitor among its other modes of action. There is constant disagreement whether large or small LDN doses are more effective and some have suggested only using the enantiomer D-naltrexone (which is a microglial inhibitor with no opioid blocking effects) or using a heterochiral mixture (more D-naltrexone than L-naltrexone). Then people could take large amounts of the microglial inhibiting isomer and smaller amounts (or none) of the opioid blocker. But this is something the pharmaceutical industry must do, you can’t have your pharmacy compound it.
Most drugs and supplements that inhibit microglial activation also have other potentially useful modes of action.
Your knowledge of pharmaceutical drugs in ME/CFS is incredible. Tell me one drug that you suspect is underused in ME/CFS and FM.
LDN is still underused, but at least now most people have heard about it.
I’d say nootropics (cognition enhancing drugs) are very underused. Most people, including many doctors, haven’t even heard of them! Piracetam is very well-tolerated and even OTC in some countries.
- Better Thinking for Chronic Fatigue Syndrome and Fibromyalgia: the Nootropics
- Piractem For Chronic Fatigue Syndrome and Fibromyalgia
Another class is NMDA antagonists. I hope to see proper studies on this front soon.
Medical marijuana is probably very underused, sadly we all know why.
I believe we probably have many great underused drugs, but even I don’t know they’re underused! There are several medications in my book that I believe would work well, but the data is still missing.
We hardly ever hear about nimodopine but it plays a key role in a Dr. Downing-Orr’s book and treatment protocol. How helpful was nimodopine for you?
It was very helpful from the first dose. It wiped off that “foggy” feeling and it helped with language problems in particular, but in a different way from piracetam, which also helped on that front. It didn’t help my fatigue or any other symptom except for orthostatic hypotension, which was always mild for me. The best part was that after half a year of taking it at half a tablet a day I was able to retain all the cognitive benefits even though I stopped taking it.
Several people on my forum have had the same experience of lasting benefits. One person found nimodipine very helpful for fatigue and blurry vision. Another woman found it made it easier for her to walk.
- Learn more about Nimodine – Nimodipine for Chronic Fatigue Syndrome and Fibromyalgia
What’s going on with your health? You benefited greatly from low dose naltrexone (LDN). Are you still using LDN? Has anything else significantly helped?
I’ve been using LDN for over seven years now. It was almost like a miracle, stopping my rapid disease progression, pretty much completely eliminating PEM (!) and increasing my ability to walk from some 50 meters to 5 km or more. I wasn’t cured but I’d sometimes work 15-hour days writing my medical books. I’ve also benefited significantly from nootropics. After starting nimodipine and piracetam I’ve written six novels, four non-fiction books, three plays and a screenplay.
Unfortunately in November 2011 acute stress destroyed most of my pituitary. The result was a nearly narcolepsy-like condition, apparently from growth hormone deficiency. Some people interpreted this to mean that LDN no longer works for me. I could still walk a lot, no PEM, but my ability to work was reduced to 0.5-1 hours on most days, often zero.
Now I’m finally getting treatment for the GH deficiency. On my own expense – not cheap, by the way. It’s too early to say whether it will fix the problem. I’m also taking most other pituitary and related hormones except for testosterone – glucocorticoids, mineralocorticoids, estrogen, progesterone, DHEA, desmopressin, T3 and T4. I might start oxytocin, too.
It has turned out that I’m helped a lot by progesterone. It’s quite a surprise, as I was hoping to
improve on estrogen, but didn’t really expect anything fromprogesterone – it’s just “something that has to be taken if you take estrogen” (which doesn’t seem to do anything). But progesterone helps my hypoglycemia and makes my breathing easier and physical stamina better. Sadly, it’s supposed to be taken cyclically. I’m on a break after 11 days and my blood sugar just won’t stay up at all.
Dozens of supplements have helped me over the years, but those that help my fatigue/functionality always stop working, I don’t know why. I’m still experimenting with new supplements despite having tried over 100 already. I just don’t expect them to help more than a month.
For sleep I use a combination of melatonin, baclofen and Sophora flavescens. B12 and methylfolate help that too. But the most important thing for my sleep is adequate hormones. For example, low cortisol used to mean not sleeping more than one hour a night.
I know of another person with ME/CFS who did very well on progesterone (but not on estrogen). She found out about progesterone by visiting forums for another disease group. How did you find out about progesterone?
I went to a Belgian clinic after I asked my Dutch CFS/ME doctor if he could prescribe me growth hormone and he said he wouldn’t, but the clinic probably would. Which they did – they use it quite often. I was already taking various hormones, but based on my symptoms, lab tests and a physical exam they added estrogen, progesterone, the GH (and changed some of my existing hormone prescriptions).
They said estrogen deficiency is one of my main problems and behind my severe hair loss (I had figured out I was deficient in estrogen, but didn’t connect it to the hair loss – time will tell whether they’re right), but they didn’t really mention anything about progesterone.
I don’t really view myself as taking it for CFS/ME (but progesterone deficiency from hypopituitarism), but of course it’s hard to say for sure which symptom comes from which problem. But I doubt I’d have never specifically asked for progesterone.
I’ll have to ask if there’s any chance I could take progesterone all the time. After all with the mini pill women are taking only (synthetic) progestagens without any breaks.
After you discovered LDN and nootropics such as nimodopine and piracetam your productivity increased greatly. You were able to put in 15 hour days but then you experienced a sudden acute stress that wiped your pituitary out and your ability to work – not to exercise – but to do the kind of mental work you were so good at before plummeted. Did you have any indication prior to that that your system was weakening or was your collapse an out-of-the blue type thing?
No, I was doing just fine. Though I’ve had minor instances of worsening hypopit, e.g. in March 2009 (I’ve been dependent on corticosteroids since), June 2012 and August 2012, where I’ve had some preliminary symptoms. For the first two there was no obvious serious stressor, the last one followed a trip to Berlin with temperatures reaching 37C.
In the first and last instance I had a sudden sensation of feeling inexplicably good for a few hours the day before the problem got worse. In the second instance I suddenly started feeling extremely thirsty, like I could drink an ocean. I wasn’t very surprised when my diabetes insipidus got permanently worse after that. (Normally diabetes insipidus does not make me thirsty.)
Do you know what happened to your pituitary? Was it your immune system? I know that car accidents can shear off the pituitary…
I have no idea. Some people have suggested it might be autoimmunity, but I’m not convinced. I’m on LDN after all, I have no evidence of any autoimmunity (which of course doesn’t exclude it; I haven’t had pituitary autoantibodies tested) and it seems strange to me that autoimmunity could destroy something so quickly, just hours from the acute stressor. I’ve only had a pituitary MRI in late 2010, before the worst problems started, which showed nothing unusual.
You wrote ‘Don’t go chasing expensive fad treatments”. Is there anything in particular you want to put in that category?
I feel that applies for most areas of medicine. Not just CFS/ME but e.g. autoimmune diseases. People think that if a new super expensive biological drug is approved, it must be the best treatment. Some new biologics do work well, others don’t. Just because something is a biologic doesn’t mean it works better than a pill. Targeted drugs aren’t automatically more effective (or safer) than non-targeted ones and new meds don’t always beat the old.
Things that have had dramatic beneficial effects on at least one person on my forum, besides the LDN, include e.g. L-carnitine, D-ribose, methylfolate, wild vegetables, gluten-free diet, ozone therapy, oral saline, beta blockers, sumatriptan (for all symptoms), tramadol (similarly), modafinil, hydrocortisone, amitriptyline, fluoxetine, clonazepam, prednisone, testosterone, IVIG, nimodipine, antibiotics. Some of these are common CFS/ME treatments, some are not.
My Finnish doctor has started treating people with saline solution (normal salt + water), usually just orally, and a few people have benefited a lot. It shows that even though this is avery serious illness, sometimes simple things can help a lot.
Many people don’t even want to try any treatments because they are just waiting for Ampligen and rituximab.
It’s not so much which is the best treatment but what is the right fit for you.
What role do you think supplements and non-pharmaceutical treatments play in ME/CFS and FM treatment?
I think for most of us medications are going to be the most helpful form of treatment (aside from rest/pacing), but that doesn’t mean other treatments are useless. Some people benefit massively from diet changes, others not at all. Mitochondrial nutrients like carnitine, D-ribose, lipoic acid, NADH and PQQ help many of us, and if mitochondrial issues are your main problem, they may help more than anything else.
Less popular supplements that can be helpful include e.g. Epicor, benfotiamine, astragalus, berberine, cat’s claw and inosine. Bromelain is great for post-exertional muscle soreness. As with meds, there are supplements that may carry a lot of promise, but hardly anyone uses them.
My Finnish doctor uses supplemental oxygen, which several of my friends have tried and feel it is very helpful. Ozone therapy may have use in some cases. A friend benefited a lot from neurofeedback. Acupuncture may help some. My Dutch doctor uses intermittent hypoxia.
You lost most of your youth to ME/CFS but you’re not bitter about it. In fact, you say that you’ve probably learned things about yourself and may even be happier than if you’d never gotten sick. What has having ME/CFS had you learn and how might you be happier than if you hadn’t to confront this disorder?
I don’t buy the common inspirational ideas that “illness is a gift” and such. It hasn’t been a path to “spiritual awakening” for me, even though post-LDN I’m grateful of such things as being able to walk. But it got me into medicine, made me realize I didn’t want to live in Finland (and move to the Netherlands) and it has made me appreciate time. I would never waste time.
You also talk about ‘accepting’ ME/CFS and FM and still fighting to get better. Many people think of acceptance as a kind of passive stance that doesn’t include taking action. Can you talk about what you mean by ‘acceptance’ and how that doesn’t mean for you caving in to this illness?
A Finnish friend (who used to have severe CFS/ME but is now much better) put it well. To get better you need a positive attitude. The attitude itself isn’t helpful – you just need it to pursue treatment. Of course for many people getting treatment is difficult or impossible, because of finances or lack of local doctors, but others just give up, thinking that CFS/ME isn’t really treatable, or that their own case is too difficult. They already tried several meds. Well, there are 250 meds in my book.
What’s the situation in Finland like for people with ME/CFS?
Bad but slowly improving. When I started CFS/ME advocacy in 2006 there was absolutely nothing. Doctors had never heard of it. One university site and one infectious disease textbook was it.
I was hopeful, but for like five years it seemed like nothing was happening. Then we started getting some magazine and newspaper articles (before that it was less than one article a year) and one important milestone was when me, my doctor and another CFS/ME patient appeared on a well-respected TV talk show.
Now in May we got an article about CFS/ME in the biggest Finnish newspaper, mentioning LDN, hypermobility (which he is researching actively) and other good things. Puzzlingly, the next day they published another article – touting CBT and GET. I guess the insurance doctors weren’t happy. I sent them a letter, not sure yet whether they’ll publish it.
The situation has been very limited in focus. I’m the only visible activist – even though I haven’t even lived there after 2010 – and my doctor is the only visible expert. As a result we’re both overwhelmed. He works from morning late into the night, I get tons of email.
Still, officially this illness does not exist. Recently some lucky people have managed to obtain disability benefits from the public insurance provider, but it’s rare. We are still waiting for the first Finnish medical paper (that isn’t a completely incoherent “review article” written by an insurance doctor). I’m aware of several Finnish celebs with CFS/ME, but no one is willing to speak out.
You’ve been an active advocate and you’re an independent and original thinker so I’m going to ask you a big question- what is missing in advocacy movements the providing of which would make them a lot more effective?
I’m not sure what’s “missing” as much as people are focusing their energy on things that I feel would be better focused on other things. It’s hard to answer in a way which doesn’t feel like I’m blaming someone. As we all know, there is all kinds of division (is CFS the same as ME etc). It seems like people are often reinventing the wheel, setting up new charities and organizations which feel duplicate. There have been at least five international CFS/ME documentaries made or in the making in the past few years.
Another thing that feels to me like waste of resources is things like people getting Niagara falls and various towers lit with colored lighting for CFS/ME awareness. Endless retweeting on Twitter doesn’t generate awareness if all your followers are fellow patients. Here is a good recent blog post about the problems with “awareness”.
I think people should focus more old marketing concept of ROI, return of investment. There is one thing the CFS/ME advocacy scene has even less of that money and that’s human resources.
Everyone should ponder whether their activism efforts actually result in something. In the age of social media I still feel like things like paper brochures are often more useful than tweets and videos. Sure, a viral video could really help our cause, but how many have there been?
Maija Haavisto is the author of “Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia” and numerous other books and plays. Check out her website here.
Your Contributions Make Health Rising Possible
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here