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All the things I've tried so far

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.

Comments

Wow what a list.thanks for this summary.over what period of time have you done all this,how many years ?And have nothing helped so far ? I m suffering too from PTSD due to severe MCS .....ah just re-read the green ones did help you .never give up,i think your on the right track .
 
Last edited:
@Irat thank you very much. Things have helped and I have made some positive progress, but I still would really like to be in a position where I could work and leave the flat whenever I feel like it. For a long time my aim was to have a romantic relationship and do more creative stuff, and I appreciate I have met that goal now, very much. I'm still striving for more though.

I've been sick 5 years. Mostly housebound for 4.
 
If cutting bread has helped, have you tried cutting gluten for an extended period? Like for a year? It took me so long to feel better. I had to be really strict with contamination too for the first 2 years. I also found dried fruits and bananas to be a real issue. I am looking at eliminating certain fodmaps as it seems like my triggers are all fructans. It just looks like a lot of the stuff that has helped you has helped me so I thought it might be worth a shot. Do you have physical pain?
 
Hopefully you are doing better now, but if not, have you tried lyrica? That was incredibly helpful.
 
Hello @Jjplant. Earlier this year I tried a low histamine diet which involved cutting dried fruits. It made me really unwell and took me months to recover.
I don't eat bananas often but I don't notice any effects from eating or not eating them.

I generally don't eat much gluten these days, and it's been quite a while now... though recently I found that when I do have a bit, it doesn't seem to make much difference - I think it may be that I can tolerate carbs a little better when I have to do a lot of activity, and I can't tolerate it when I'm needing to just rest.

I am with a functional medicine practitioner and I'm just trying the stuff she's recommending I try based on the thyroid and vitamin D tests I've had. I'm about to do the DUTCH test so I'm sure I'll have some good direction from that.

I haven't tried pregabalin but I've heard good things! It's got mixed reviews but as with all things ME/CFS, it might be worth a try. https://www.stuffthatworks.health/myalgic-encephalomyelitis/treatments/pregabalin
 
Stuff That Works is a great database tool for comparing treatment results in a systematic way. It is very detailed and has many entries from patients.

Here is another one that is much simpler, but doesn't have many entries
From the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society

https://ammes.org/treatment-database/
 
Thank you for asking @linusbert. That was an error from brain fog! I actually meant psychodynamic psychotherapy. I will correct it now :)
It helped me process trauma, which helped my life immensely, without which I'm sure I'd be much more stressed in my daily life which would likely lead to worse ME/CFS symptoms.
 
Thank you for asking @linusbert. That was an error from brain fog! I actually meant psychodynamic psychotherapy. I will correct it now :)
It helped me process trauma, which helped my life immensely, without which I'm sure I'd be much more stressed in my daily life which would likely lead to worse ME/CFS symptoms.

i am curious, how does it work?
 
i am curious, how does it work?
I'm not an expert, but speaking from my own experience - the psychodynamic psychotherapist I had knew about Jung and Freud and that sort of thing. It's a kind of talking therapy where they interpret what's being said, and find patterns of what's happening now that stem back to childhood history. She knew about attachment theory and all sorts of exercises to help me express the traumatic stuff that had happened.

I don't quite understand how it differs from other talking therapies - I have a humanistic therapist now, and the main difference seems to be that she is more free in telling me about her own background as a way of relating, and also doesn't tell me her interpretations so much.

With those sorts of talking therapies, you talk about what comes to mind in a free way. With something like CBT, it's more structured - you work on a specific problem that is happening now, so it's not so good for uncovering deep layers of trauma, it's more about coping now.

Is that the sort of answer you were looking for?
 

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