Treatment Strategy for Chronic Fatigue Syndrome (ME) – a Work in Progress

Due to the complexity of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME) (which is the same condition), and insufficient research funding to date to tackle the issue, there is a lot of uncertainty surrounding how to approach treatment. There is very little consensus as to the condition or its treatment in fact.

Some people do recover or improve but there is a lot of uncertainty as to how this happens. Unfortunately a significant number of these ‘recoverers’ later regress, falling prey to CFS for a second time and with worse symptoms. So cases of recovery can also be misleading.

However, as of 2014, there are a number of researchers and doctors that have had some success with validating hypotheses on the basis of the disease and treatment approaches.

As a result of the ‘bleeding edge’ nature of treatments and diagnosis, people afflicted with Chronic Fatigue Syndrome (CFS) are ultimately left to decide upon their treatment strategy themselves. This can then guide their choices about doctors to work with, tests to pursue and self treatment interventions, from the many different approaches.

On this page I keep an updated overview of my treatment strategy, the hypothesis on the mechanics of the disease this is based on and my progress with it.

I presented an overview of my approach through to end 2013 and my discoveries at the Quantified Self Global Conference held in San Francisco, October 2013. You can watch this in the video below.

I came down with ME/CFS in early 2012, with a steadily worsening condition, and first got a test based diagnosis in November 2012 (although I had already suspected it). For me the disease progressed at an alarming rate, starting with strange headaches, sickness and exhaustion, moving to muscle weakness and twitches, gut issues, blurred vision, insomnia, neuropathies and at times difficulty walking.

Since my diagnosis I have been aggressively studying, collecting data on relevant biomarkers and experimenting with ‘the most likely to be effective’ treatments. The good news is that I have halted the (alarming) progress of the disease and have improved and recovered some lost function (e.g. neuropathies, energy levels, elimination of headaches) using a variety of ‘consistent’ interventions and protocols.

I believe that CFS is curable, but it takes time, patience and consistent intervention with a combination of therapies targeting the root causes and supporting recovery. I also believe that to make sure it is a permanent recovery, the work to repair the body and rebuild its resources must be continued long after symptoms have receded.

Different doctors and researchers have had widely varying results with different protocols and with different patients. Which is part of the problem of the condition. In my opinion ME/ Chronic Fatigue Syndrome is a multi-factorial disease that can be triggered by many different events and factors that combine together to create the diseased state.

I don’t believe that there is any one cause, and as a result, any one solution. This is part of why research has made such little progress. It’s dealing with a heterogenous population of sick people who have been pooled together, but in fact are combatting different causes to their “CFS”.

The diagrams below summarize my current view of the chronic fatigue syndrome disease process and my treatment strategy. They do not cover all of the details. More importantly – I use this as a constant reminder to focus my efforts and $$$ on:

  1. Studying and learning about the most important aspects of the disease and its biochemistry.
  2. Tracking the most relevant biomarkers to understand my status and progress.
  3. Treatments that have the biggest positive impact (and chance of ultimate success).
CFS-Recovery-Strategy
CFS-Recovery-Strategy

My research has focused on a few areas and the researchers / doctors/ civilian scientists working in those areas and some interesting experiences of patients.

These are listed by priority which is by certainty of impact (how well is the mechanism linking the area to disease defined? How actionable is the area with certainty of positive outcome?)

  1. Biotoxin Illness: Dr. Ritchie Shoemaker, Dave Asprey and Erik Johnson.
  2. Mitochondria: Dr. Thomas Seyfried, Aubrey de Grey, Dr. Terry Wahls, Dr. Sarah Myhill and Russell Blaylock.
  3. Pathogens: In my case specifically enterovirus, and the work of Dr. John Chia.
  4. Methylation: Rich Van Konynenburg, Dr. William J. Walsh, Dr. Amy Yasko and Dr. Ben Lynch.
  5. Toxins (Heavy Metals, Pesticides, other): Numerous researchers and studies.

I change, update and revise this list and my approach as time goes on and as I learn more.

Note: Thiol + Enzyme antioxidants include the glutathione peroxidase and glutathione reductase that are found most in Rich Von Konyenburg and Russell Blaylock’s work.

Posted in Biohacking Frameworks, ME/ Chronic Fatigue Syndrome
  • Carolyn McNamee

    are you aware that there is apparently a 70 secrecy act (in the UK) on the illness of ME (also known as chronic fatigue syndrome and I believe fibromyalgia? This leads me to wonder could vaccinations be involved in the cause of the condition? (vaccines preservatives can contain or have contained all kinds of toxic nasties…)

    • Adam Hael

      I have many of the same symptoms but was diagnosed with Morgellons in 2005. I was never told however, I found out by looking into my medical records. My issues began with chronic mercury poisoning as child due to my father working as a lighting maintenance tech and breaking up the used light bulbs in dumpsters with no protection. His clothes were of course washed in the same machine. I have not had a vaccine since I was around 9 as far as I can remember but they have thermisol in them which contains mercury.

  • john carraway

    The primary cause of all disease is mineral deficiencies (the Ph of the body’s flesh – not its blood). The acid/alkaline balance of the body controls the efficacy of all modalities. In other words, alkalinity is the prerequisite (foundation) upon which you build all other therapies. It is the keys to the car. You can fill it with gas and oil, but without the keys it won’t start. That is what you must include in your daily regimen. Acidity attracts pathogens and parasites, alkalinity repels pathogens and parasites. Once you have alkalized your body, the other therapies you’re following will begin to work. Google Sherry Brescia, herbdoc.com, Gary Tunsky, Capt.Randall, and read Dr.Sherry Rogers.

  • Audrey Walker

    I’ll be following your story as I have much of the same health background. Things that worked for me include: raw vegan diet, detoxing with calcium bentonite clay and activated charcoal, avoiding EMFs and earthing, meditating and yoga (Read “The Last, Best Cure” by Donna Jackson Nakazawa), supporting methylation, magnesium, natural immunemodulators like black seed oil combined with turmeric and chaga mushroom, Lions Mane mushroom (regenerates nerves), chinese skullcap (reduces cytokines) and other herbs. I’m about 60% recovered from being bedridden and crashing daily and have full faith that I will find the way to regain my health completely. I won’t give up until I do. Smart of you to track costs! I wish I had done that. I believe I’ve spent at least $20K

    • http://biohacked.net/ damien blenkinsopp

      Hi Audrey, great to hear your positive story and those references. And I love your attitude. Keep at it – not long now before we make this thing just another past learning lesson of life.

      • Audrey Walker

        Same to you! 🙂

    • stacy

      Audrey, can u elaborate more on your raw vegan diet? Is it similar to 80-10-10? I would love to know what a typical day’s diet is like.. Many people seem to promote paleo for cfs and biotoxins issues, but I’ve known others that succeed as a vegan. Thanks!

  • Kelly

    Is it possible to follow your protocol if one is not wealthy, or even remotely wealthy? Serious question.

    • http://biohacked.net/ damien blenkinsopp

      Right now, to approach it the same way as me is expensive. The parts that I’ve kept are not very high cost though. It’s the testing and experimentation and consultations that add up. So eventually I don’t think it should cost a lot of money – nothing I’m using in terms of treatment costs that much.

      • Kelly

        Thanks for your honest reply. Much appreciated…

  • Terry

    I love & appreciate your illustration. It is so helpful in organizing thoughts on treatment.
    I’d also appreciate more detail on which treatments/supplements have worked for you—more specific than the protocols you listed. I know we are all different, but sometimes I find new products to try through others experiences.
    On that note, you have encouraged me to look more closely at the Bulletproof website, and I’ll be trying some of his detox supplement ideas.

    • http://biohacked.net/ damien blenkinsopp

      Glad to hear it’s helpful. I will be posting more up over time about what has worked. It will be a slow process though as I’m being careful to collect data beforehand, as I don’t want to give out false hopes.

  • Jared Heldt

    Interesting and similar to things that I have been looking into and researching chronic fatigue syndrome since 2009.

    http://www.naturogenix.com

  • Terry

    On another page you mention stopping taking Krill oil because your diet is sufficiently omega 6:3 balanced. How are you certain of that balance? Eating lot of fish, only grass-fed meat, and lots of veg?

    • http://biohacked.net/ damien blenkinsopp

      You get an Essential Fatty Acids test and trend it over time. It’s worth doing a couple of times.
      If you’re eating a healthy paleo style diet with wild/ grass fed meats you aren’t getting a lot of omega 6, so there’s no reason for your ratio to be getting Omega 6 heavy.

  • Terry

    One more question: have you tried bentonite clay or zeolite instead of cholestyramine?

    • http://biohacked.net/ damien blenkinsopp

      Not before I identified biotoxin illness as part of my problem. I had used bentonite clay before that – and it hadn’t had a noticeable impact. It’s possible using it longer or at higher dose (higher frequency like CSM protocol) may have. But since Bentonite Clay binds to more than just fat solubles, that puts you at higher risk of micro nutrient deficiency. I’m now off CSM, I plan to experiment with other binding-tools if my VCS drops again. So far so good though, no need.

      • Terry

        Yes, I have the same fears about taking clay internally. One more question (I promise!): do you have a mineral supplement that you trust? I’m looking at fulvic sups, but they contain nasties like fluoride, tungsten, etc.

  • Sol

    From the article organic food in Andalusia I end up here 😉 … ME…
    Me is a very individual process, take in the information as inspiration and listen to your own body (and intuition). Being in this condition for 24 years (from I was a teenager), I learned a lot when I got bedridden for 6 years. I started to look at it as a project, how did I end up in this situation, what is the situation right now, and what to do to change it.

    Food is important, I noticed what works and doesn’t work, but this changed along the way. You can spend a lot of money on doctors and supplements (like I did), but the fact is: everybody is searching, and most of the time you know more about your own physical and mental being than a doctor or therapist. When I was in a coma-like situation, the only thing that worked was to sleep and to have liquid food. Then I turned to TCM (trad.chinese.med) and Ayurveda, which helped me to circulate my energy again, in a very slow pace.
    Also finding solutions to ease the pain, and find ways to deal with the pain, and to deal with more practical things.

    Now it is has been 10 years ago that I got bedridden, and many things have happened the last 4 years, I am no longer bedridden (!) and live a beautiful quiet life. But is ME 100% curable? It may be for some people, it may be in the future…but as long as there is nothing solid out there, I just keep on walking my own path. The life I am living is 40% of what it was before (I got bedridden), but I am so grateful for this 40%. And I feel there is more to gain, only time will tell how much more. The cure is an interaction between inner & outer processes, but I believe it starts with the inner process. Learn to find out what you truly need (for your body, mind, heart & soul), and then search where and how you can get what you need. Simple, no? 😉 Health & Happiness for all of you, Sol.

  • Kelly

    Hi again Damien,

    I know you’ve basically recovered (or like 80%), and are a huge proponent of Dr. Shoemaker, but I’m curious if you’ve looked into the studies and work done by Dr. Joe Brewer, who agrees and disagrees with some of Shoemaker’s hypothesis, and apparently doesn’t seem to think it’s essential to do extreme avoidance?

    The reason I ask is that several people I’ve met online have had the Shoemaker tests done, and their family members have the so-called ‘dreaded’ genotypes, yet they’re not sick at all. (Some of them have posted on the Phoenix Rising forum regarding these results and also their experiences w/Brewer.)

    Great to hear though that you’re doing so well.

    • http://biohacked.net/ damien blenkinsopp

      Hi Kelly,

      I imagine you saw my post on the issue with Shoemaker’s genotypes on a forum yesterday.

      So, yes, to a great extent I have recovered and continue to improve. I’d like to stress that my progress has been based on a multifactorial approach addressing the the parts I’ve outlined in this post (and updated recently as I added new approaches). Shoemaker’s protocol and work have helped me a lot, but it is just one piece of the puzzle for me – and I think that would be the same for most people.

      Exercise intolerance was one of the most stubborn symptoms and I seem to be making good progress in this area now. The most limiting symptom I have now is sensitivity to WDB (Water Damaged Buildings) – thus making avoidance necessary. Just in the last couple of weeks a new approach I began seems to be dealing with this issue effectively – I’ll write up my experience when I have more data and the experiment has run its course (e.g. 1 month).

      Like Joe Brewer, I agree and disagree with some of Shoemaker’s work. The strengths of Shoemaker’s work is the rigor of data he has collected for labs and his procedure for mostly managing symptoms. So you can be 100% sure you have the biotoxin issue and avoidance will help once you’ve done these labs.

      However, Shoemaker takes more of a conventional medicine approach rather than a functional approach – so it does not address the underlying issue that causes the illness. This is the main limitation, but for Shoemaker it makes sense, as he believes it is genetic – and thus ‘uncurable’.

      I would disagree. I believe ‘biotoxin illness’ is “epigenetic”, and that is where my most recent approach has been focused – which seems to be working out (I won’t talk about it until I’m sure though). So in my world, biotoxin illness is an epigenetic shift that just needs to be corrected back to the norm. A recent CFS epigenetic study showed large shifts in the epigenetic expression of genes for for the immune system compared to controls.

      That means that in order to eliminate sensitivity to mold/ mycotoxins, and eliminate any need for avoidance, you need to flip your epigenetics back. I’m not the first to think this, and have spoken with others who have completely recovered who believe this is what happened.

      Shoemaker has identified ~25% of the population with genes that are susceptible to his biotoxin illness model. However, we know that 25% of population does not have this sickness – no where near that thankfully! So as you’ve pointed out, it’s not surprising that some people have come up negative for biotoxin illness – or are not sick in anyway, yet have reported the susceptible HLA DR genes. The way I see it, those people have potential to get sick only if they meet with an incident that shifts the epigenetics of their immune system (potentially the expression of the HLA DR themselves). These epigenetic insults are becoming more common, but most don’t come across them.

      I’m aware of Brewer’s work, and think it’s interesting and will get tested for body burden of mycotoxins via Real Labs or another at some point. That comes under my pathogen area i.e. eliminating or controlling as many pathogens as possible.

      As with Shoemaker’s work, I think Brewer’s work is just another potential piece of the puzzle – and it has less data on it. It hasn’t been a priority for me as A) he is using continuous drugs (Ampho B) to treat which I avoid whenever I can (I’m not interested in solutions that are just managing symptoms with drugs for the long term) B) I think it’s possible that harboring higher levels of mold/ mycotoxins is just a natural downside of having a dysregulated immune system, rather than being an original cause. Many active infections are found in people who have been diagnosed with “CFS” – fungi/ mycotoxins may just be another one, which deserves attention, but is probably not the source of the issue.

      To sum up: There are many good researchers and doctors working on different parts of the puzzle, and uncovering really useful information, and I think pulling that information together into a multifactorial model is the way to go – rather than committing to any of the “one perspectives”, as none of them fully explain CFS – but I feel that a multifactorial model can, and we’ll eventually arrive there.

      • Kelly

        Thanks for your reply Damien. I didn’t see your post on another forum, but agree with your overall view. The key I think is to reduce the overall toxic burden, whether it’s from mold, pesticides, fungal infections, parasites, etc., and the epigenetic expression will shift back to where it should be.

        I look forward to your book when it comes out. 🙂

        I hope I’m still around when it does…

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