Helminthic therapy and ME/CFS

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This page is about the use of helminthic therapy to treat the condition known variously as myalgic encephalomyelitis, myalgic encephalitis, ME, M.E., chronic fatigue syndrome, CFS, ME/CFS, chronic fatigue and immune deficiency syndrome (CFIDS), post-viral fatigue syndrome (PVFS) and systemic exertion intolerance disease (SEID).

The details on this page may also be relevant to the use of helminthic therapy in the treatment of Long COVID, for more about which, see Helminthic therapy and Long COVID.

The anecdotal evidence

To read reports of both success and failure in using helminthic therapy to help treat ME/CFS and fatigue, see the following page sections.

• Helminthic therapy personal stories: ME/CFS

• Helminthic therapy personal stories: Fatigue

The scientific evidence

No clinical trials have been conducted to assess the effect of helminthic therapy in ME/CFS, but a socio-medical study found one individual with "chronic fatigue" who experienced mild side effects from the use of NA, but no benefits, while another individual reported no side effects but benefits which they rated at 9/10. Four other subjects reported that NA provided a 50% success rate with "chronic fatigue syndrome".

• Overcoming Evolutionary Mismatch by Self-Treatment with Helminths: Current Practices and Experience (PDF)

Helminths effective against ME/CFS

Feedback received from people with ME/CFS shows that the human hookworm, NA, is the best currently available worm species to use in treating this condition, with the rat tapeworm, HDC, also being of possible benefit, and low-dose TSO helpful in providing a graduated initial exposure to helminths prior to commencing the use of NA.

For more about appropriate dosing regimens, see Helminth dosing for ME/CFS below, and, for more about helminth selection, see Selecting a therapeutic helminth.

Helminth choice and dosing for ME/CFS

ME/CFS is one of several conditions that require a special approach to helminth dosing and it is imperative that everyone with ME/CFS reads this page section.

Commencing with TSO before adding NA

It may be best for ME/CFS patients to start helminthic therapy with TSO before introducing NA.

I have CFS and was too hasty with NA (5 and then another 5 at the 12 week mark). Got terrible insomnia that didn't go away for months past the normal 12 week side effect window until I killed them. Wasn't aware of it at the time but definitely wished I had started with TSO and followed the recommended dosing regimen for CFS. I reckon caution is worth it in the long run! [1]

The following approach, commencing with TSO and then adding in NA later, is recommended by one of our editors who has ME.

Start low and go slow. I started with 5 NA as my first dose and it was really hard going. So, instead of taking a second dose at 12 weeks I started TSO instead and, in hindsight, it may have been better if I'd begun with TSO before moving on to NA. So I suggest you buy 10 bottles of TSO at the start. (And, yes, it's expensive, but it's worth it!)

My suggestion is to start with part doses taken from a single bottle of 2500 TSO. Each bottle contains 15ml. For the first dose, take 3ml (500 ova). Then take subsequent doses of 6ml, 9ml, 12ml and finally the full dose of 15ml (2500 ova). Allow 2 weeks between each dose and be careful to shake the bottle thoroughly immediately before drawing up a dose.

(For more about the use of TSO, see: Self-treating with TSO, and especially the section for hypersensitive individuals.)

Continue with full doses (2500 TSO) until you have taken about 7 bottles. Then, before using the last three bottles, inoculate 3 NA. Any more than 3 hookworms and you may find the side effects, especially the fatigue, are very hard going.

Don’t stop taking the TSO until at least 4 weeks after starting NA. You will probably have some side effects from the NA, and the TSO should help to reduce these. If you do have troublesome side effects, delay the second NA dose until these subside because ME/CFS people can be quite sensitive to HT side effects.

(For more about the use of NA, see: Self-treating with NA.)

After I resumed taking NA, the fatigue worsened a few weeks into the second round and I started to catch every cold going around. This went on for nearly 12 weeks but then the fatigue started to improve. It was a very trying time, but gradually my energy levels improved from my ME/CFS baseline and it has been worth it. Even now I still can't tolerate any more than 3 NA in each dose and I never re-dose before 12 weeks, but, since beginning to host hookworms, I am noticeably improved and life is so much better. (Edited from four posts: [2] [3] [4] [5].)

Understanding dosing with NA and TSO

Anyone choosing to treat ME/CFS with NA should read the entire Hookworm dosing and response page before commencing. Those who have failed to do this, so didn't fully understand how to manage dosing with NA, have reported the following adverse experiences.

I decided to start helminth therapy a few months ago for my ME/CFS. I took 3 NA for the first dose and noticed my symptoms worsening slightly. I decided to push through and take another 3 NA (at 12 weeks) for my second dose (even though the side effects from the first dose were still all flaring). This time my ME/CFS became so severe that I had to stop the treatment asap. (I got an anthelmintic drug from my Dr.) It's been weeks and I still haven't fully recovered from it. [6]

I took 5 NA in Sep 2015, with few side effects. Waited 5 months and re-dosed with 10 NA in early Feb. Am experiencing the worst flare in 5 years, since day 12 post inoculation (now day 22). [7]

I have taken a total of 9 NA so far (split into 5 and then 4 three months later). The NA appear to have made my already bad sleep patterns even worse after 6 months of treatment. [8]

And, from the mother of an 18 year-old with IBS and ME:

The helminths seem to have sorted out his IBS which is amazing but the road to recovery from M.E. is proving quite tough. After the first inoculation with 5 NA, he started feeling better at around the 3-month mark so we inoculated again with another 5 NA. Now I wish we had just done 1 or 2 NA. His fatigue has been very bad and now he is having a great deal of trouble sleeping as well as being a bit constipated. He hasn't slept at all for the last 48 hours or longer. [9]

A nurse specialising in helminthic therapy has reported her experience of assisting ME/CFS patients, as follows.

Sticking to very low doses is key, as those with long covid and CFS seem particularly sensitive. Even just 2 NA. Or small doses of TSO, but this really is individual. Most seem ok on 250 TSO each fortnight. Some only a quarter of that. We really just have to go on how sensitive they are to any treatment, if they have other issues as well, and how concerned they are about side effects. But one can never tell who will ultimately need big doses and who will only tolerate small. Starting small and working up is really the only solution. (Edited from three posts: [10] [11] [12].)

Cautious experimentation is essential

Due to the considerable variation that is seen in individual responses to different helminth species and different dosing regimens, it is essential that each self-treater experiments to identify their own unique requirements for helminth type and dosing. The following report illustrates how one individual with ME/CFS found that NA - the species that has helped numerous others with this disorder - was ultimately not the worm for her, in spite of her having introduced this very gradually.

After trying to treat ME/CFS and multiple food intolerances for nearly 3 years using small doses of NA (3 every 3-4 months), I’ve decided that NA is not for me. I did have noticeable improvement with symptoms and energy levels early in my HT journey, which I attributed at the time to NA. However, persistent generalised itchy skin (not eczema), constipation and insomnia have worsened over the past year or so.

I started with 5NA in January 2021 but, after 3 months of unpleasant side effects, I started TSO at low, fortnightly doses. Using the bottles containing 2500 ova in 15ml of solution, I started by taking 3ml, then doses of 6, 9, and 12 ml at fortnightly intervals. Finally, I took the full 15ml, and I continued on this dose until I'd used about 8 bottles.

I then went back to NA, but again experienced worsening fatigue. When this subsided at about 9 weeks, I began to notice improvements in food intolerances, and then energy levels.

Having attributed these improvements to the NA, I continued with small doses of NA and didn't resume the TSO. But, looking back on the bigger picture over the past 2 years, I've seen my food intolerances return, along with constipation, insomnia and the itchy skin which never quite subsides after a dose of NA. I also noticed that, on a couple of occasions when I reduced or terminated my NA colony due to side effects, my energy levels improved noticeably.

I now wonder if the improvement in energy and food tolerance I experienced a couple of months after my course of TSO in 2021 may have been due to the TSO, and not the NA that I had before and after the TSO.

I terminated what NA I had left a couple of months ago (Oct 2023), after very persistent insomnia and constipation. I then started TSO again using the same regimen as in 2021, i.e., 3ml, then 6, 9, 12, and now 15ml. The fatigue is still there and I still crash (those with ME/CFS will understand this) and I'm hoping my food intolerances will improve soon. But the itching has reduced a lot and the constipation and insomnia are gone. (Edited from this post:)

What this individual appears not to have tried is dosing with only one or two NA every 12 weeks. Doing this might have made a significant difference to the side effects.