First posted in summer 2021
Updated spring 2023
I recently put data about treatments I've tried into Stuff That Works to help build their database. They're hoping to identify treatments that work for subgroups. I thought it might be helpful to share my big old list here.
I've split it up into categories to make it easier to digest. I've loosely divided it into 'pills' and 'techniques' although there is some crossover depending on what the category is.
I've italicised anything that I'm sure didn't work for me. To be fair, I don't know if cranial osteopathy would work for me if I could give it a proper go, but I was not well enough to keep going to the sessions. As you can see, almost everything I tried had some merit, or at least didn't make things worse. There's a lot which I am unsure if it makes any difference at all.
I'm still doing/taking a lot of the below. I occasionally come off a medication/supplement and see how I fare, but I've almost always gone back on the medication/supplement because I seem to do better on them. I find it very difficult to know if I've crashed because of coming off a supplement or because of stress/activity, so it's really not a perfect science, which I do find frustrating.
If it's in green, it means I feel it helped markedly. I've gone from being bed bound not able to send people messages on WhatsApp, to having a romantic relationship and being able to do weekly short walks. I'm still in bed most of the time but I can sit up more of the time, and I'm more able to spend time doing creative pursuits. I am the moderate end of severe or the severe end of moderate. I'd like to be able to leave the flat a lot more than I do.
PILLS
Anti-virals
Acyclovir
Hormone treatment
Levothyroxine, ashwaganda, oestrogen cream, combined contraceptive pill, mini contraceptive pill
Drugs affecting mood
Low dose naltrexone (LDN), weed brownies, CBD oil, CBD vape pen, citalopram, sertraline (anti-d's used for mental health rather than ME/CFS)
Sleep
Phenergan, melatonin, Nytol, Kalms, sleep schedule
Anti-histamines
Fexofenadine, cetirizine, loratadine
Supplements
Iron, selenium, vitamin d, vitamin c, n-acetyl cystine, l-carnatine, luteolin, magnesium, cod liver oil, omega 3, PQQ, CoQ10, folic acid, d-ribose, SAM-e, activated charcoal, saw palmetto, movicol (for constipation), turmeric tea (homemade with black pepper), grape juice, chromium, digestive enzymes, saffron, sho-saiko-to, vitamin C liposomal
Vitamin B12
b12 spray, b12 patches, b12 tablets, b12 injections
Pain relief
Paracetamol
TECHNIQUES
Symptom management methods
Clinic-run symptom management course, CBT (for coming to terms with needing a wheelchair)
Medical Practitioners
Dr Bansal (immunologist & CFS specialist), Sophie Tully (functional medicine practitioner specialising in hormones), young GPs
Tests
Every test the GP could possibly give me, hair mineral test, DUTCH test (identified oestrogen issue)
Trauma
Psychodynamic psychotherapy, Trauma-Focused CBT, humanistic psychotherapy, expressing emotion, journalling
Mind-body therapy
Cranial osteopathy by a Perrin-trained practitioner, Trauma Release Exercises, reiki, massage
Movement
Physiotherapy, dance, yoga, hula hooping, singing, belly dancing
Regulating nervous system
Meditation, breathing exercises, qi gong, Kum Nye, TENS machine, singing
Diet changes
Cutting gluten, cutting bread, reducing sugar, increasing wholegrain, increasing fruit and veg, increasing salad, increasing protein (eggs for lunch make a significant difference), reducing dairy (milk gives me eczema!), low histamine diet
Reducing and regulating activity levels
Careful pacing, rest, aggressive rest, regular timed rest through day, reducing work hours, stopping work, pushing, forcing myself to stay still even if my mind isn't resting, not being all-or-nothing about tasks and breaking them into smaller ones to do over time
Improving environment
Removing mould from environment, air purifier, making my environment better (cleaner/prettier/easier/quieter/tidier), being in nature when possible, putting affirmations/strengths/healing things on the wall
Detoxing
Hot baths, dry brushing, infra red light lamp (it supposedly helps with pain, doesn't help at all with detoxing after all. Need a FIR sauna for that), tulsi tea
Elevating mood and reducing stress
Watching comedy, laughing more, avoiding sad tv, avoiding stressful people and situations
Challenging unhelpful habits/traits
Working on perfectionism, working on overachieving, increasing self love actions, working on phone dependancy
Educating myself around illness
Watching conferences/talks on improving health, learning about the science, learning about pain management, reading How To Be Sick by Toni Bernhard
Being organised and supported on the journey
Monthly check in with myself about how things are going and what to try next, online peer support, tracking symptoms over time (day-to-day and annual check-ins)
Finding meaning
Making art about my experience, turning my experiences into social media activism, passing on what I've learnt to support others
Daily living support
Learning to ask for help, getting a cleaner, finding a neighbour to cook meals for me (costs covered through a charity), getting a PA (though she quit so I need to find another)
Here are some things I'd be interested to try in the future:
- oestrogen pills
- Gupta/ANS rewire programmes
- other somatic therapies
- EMDR
- Mickle therapy
- Optimum Health Clinic
- Neurofeedback
- Perrin technique/ cranial osteopathy when I'm well enough to try again
- oxygen therapy
- ayurvedic doctor
- energy healing
That's probably the order I'll be trying them in, too, if I can get access.
I am dealing with a lot of trauma too, so it is very possible that processing some trauma might be the thing that starts to turn it around for me. This is my current hope. Living with flashbacks and the somatic stress of trauma is not helping my body relax enough to heal sometimes.
Of course, my other big hope is the research that's going on: the OMF, DecodeME, and all the long-covid research. We are on track for getting a treatment that works within a few years, I believe. I have faith. In the meantime, I hope this list might give someone an idea about something new to try that might help a little.
Updated spring 2023
I recently put data about treatments I've tried into Stuff That Works to help build their database. They're hoping to identify treatments that work for subgroups. I thought it might be helpful to share my big old list here.
I've split it up into categories to make it easier to digest. I've loosely divided it into 'pills' and 'techniques' although there is some crossover depending on what the category is.
I've italicised anything that I'm sure didn't work for me. To be fair, I don't know if cranial osteopathy would work for me if I could give it a proper go, but I was not well enough to keep going to the sessions. As you can see, almost everything I tried had some merit, or at least didn't make things worse. There's a lot which I am unsure if it makes any difference at all.
I'm still doing/taking a lot of the below. I occasionally come off a medication/supplement and see how I fare, but I've almost always gone back on the medication/supplement because I seem to do better on them. I find it very difficult to know if I've crashed because of coming off a supplement or because of stress/activity, so it's really not a perfect science, which I do find frustrating.
If it's in green, it means I feel it helped markedly. I've gone from being bed bound not able to send people messages on WhatsApp, to having a romantic relationship and being able to do weekly short walks. I'm still in bed most of the time but I can sit up more of the time, and I'm more able to spend time doing creative pursuits. I am the moderate end of severe or the severe end of moderate. I'd like to be able to leave the flat a lot more than I do.
PILLS
Anti-virals
Acyclovir
Hormone treatment
Levothyroxine, ashwaganda, oestrogen cream, combined contraceptive pill, mini contraceptive pill
Drugs affecting mood
Low dose naltrexone (LDN), weed brownies, CBD oil, CBD vape pen, citalopram, sertraline (anti-d's used for mental health rather than ME/CFS)
Sleep
Phenergan, melatonin, Nytol, Kalms, sleep schedule
Anti-histamines
Fexofenadine, cetirizine, loratadine
Supplements
Iron, selenium, vitamin d, vitamin c, n-acetyl cystine, l-carnatine, luteolin, magnesium, cod liver oil, omega 3, PQQ, CoQ10, folic acid, d-ribose, SAM-e, activated charcoal, saw palmetto, movicol (for constipation), turmeric tea (homemade with black pepper), grape juice, chromium, digestive enzymes, saffron, sho-saiko-to, vitamin C liposomal
Vitamin B12
b12 spray, b12 patches, b12 tablets, b12 injections
Pain relief
Paracetamol
TECHNIQUES
Symptom management methods
Clinic-run symptom management course, CBT (for coming to terms with needing a wheelchair)
Medical Practitioners
Dr Bansal (immunologist & CFS specialist), Sophie Tully (functional medicine practitioner specialising in hormones), young GPs
Tests
Every test the GP could possibly give me, hair mineral test, DUTCH test (identified oestrogen issue)
Trauma
Psychodynamic psychotherapy, Trauma-Focused CBT, humanistic psychotherapy, expressing emotion, journalling
Mind-body therapy
Cranial osteopathy by a Perrin-trained practitioner, Trauma Release Exercises, reiki, massage
Movement
Physiotherapy, dance, yoga, hula hooping, singing, belly dancing
Regulating nervous system
Meditation, breathing exercises, qi gong, Kum Nye, TENS machine, singing
Diet changes
Cutting gluten, cutting bread, reducing sugar, increasing wholegrain, increasing fruit and veg, increasing salad, increasing protein (eggs for lunch make a significant difference), reducing dairy (milk gives me eczema!), low histamine diet
Reducing and regulating activity levels
Careful pacing, rest, aggressive rest, regular timed rest through day, reducing work hours, stopping work, pushing, forcing myself to stay still even if my mind isn't resting, not being all-or-nothing about tasks and breaking them into smaller ones to do over time
Improving environment
Removing mould from environment, air purifier, making my environment better (cleaner/prettier/easier/quieter/tidier), being in nature when possible, putting affirmations/strengths/healing things on the wall
Detoxing
Hot baths, dry brushing, infra red light lamp (it supposedly helps with pain, doesn't help at all with detoxing after all. Need a FIR sauna for that), tulsi tea
Elevating mood and reducing stress
Watching comedy, laughing more, avoiding sad tv, avoiding stressful people and situations
Challenging unhelpful habits/traits
Working on perfectionism, working on overachieving, increasing self love actions, working on phone dependancy
Educating myself around illness
Watching conferences/talks on improving health, learning about the science, learning about pain management, reading How To Be Sick by Toni Bernhard
Being organised and supported on the journey
Monthly check in with myself about how things are going and what to try next, online peer support, tracking symptoms over time (day-to-day and annual check-ins)
Finding meaning
Making art about my experience, turning my experiences into social media activism, passing on what I've learnt to support others
Daily living support
Learning to ask for help, getting a cleaner, finding a neighbour to cook meals for me (costs covered through a charity), getting a PA (though she quit so I need to find another)
Here are some things I'd be interested to try in the future:
- oestrogen pills
- Gupta/ANS rewire programmes
- other somatic therapies
- EMDR
- Mickle therapy
- Optimum Health Clinic
- Neurofeedback
- Perrin technique/ cranial osteopathy when I'm well enough to try again
- oxygen therapy
- ayurvedic doctor
- energy healing
That's probably the order I'll be trying them in, too, if I can get access.
I am dealing with a lot of trauma too, so it is very possible that processing some trauma might be the thing that starts to turn it around for me. This is my current hope. Living with flashbacks and the somatic stress of trauma is not helping my body relax enough to heal sometimes.
Of course, my other big hope is the research that's going on: the OMF, DecodeME, and all the long-covid research. We are on track for getting a treatment that works within a few years, I believe. I have faith. In the meantime, I hope this list might give someone an idea about something new to try that might help a little.
