[janet gunter]

While I like recovery stories, I rather dislike stories that claim “this is what cured me”. I don't believe that we often know what causes people with Long Covid or ME-CFS to recover.

However, I feel like there is a dearth of information out there for people struggling with these conditions about effective treatments. The NHS' own clinical guidelines have not been updated since 2021. So here I'm sharing interventions that help me, that have some sort of scientific basis. Some of them it's early days, and not enough resources have been invested in further research. So this comes with that caveat. Everything here has some, but probably not enough, scientific basis. Everything here is also quite low-risk in terms of side effects, with the exception of HRT.

Moreover, nothing here is super expensive on its own. Although cumulatively, it makes it quite expensive to be ill on a monthly basis especially considering my income has plummeted.

I've tried a lot that I've left off of the list, and I've left anything off that I'm not extremely certain is helping me.

And it's worth mentioning that cutting out as much stress as possible, radical rest, pacing and good hydration and diet are the building blocks.

1) Vitamin B12 – In my case, I self-inject. Others may benefit from “loading” via healthcare providers and ongoing support. This helps with my “concrete legs” feeling and gives me a boost in energy. I also believe it helps my sleep. Before Covid, I was likely borderline, and the virus likely did a number on my gut and massively depleted my reserves. For milder cases, oral supplementation might still be an option. In my experience, the NHS is not really on the ball with respect to B12 deficiency, although the new NICE guidelines are an improvement. [Adding: like many people, after being diagnosed with a B12 deficiency, I later developed an iron deficiency and didn't mess around, I got an expensive infusion which rescued me.]

2) CoQ10 – Coenzyme Q10 is known to help with mitochondrial function. There is a growing body of research that it can help with post-viral conditions. Helps boost my energy envelope.

3) LDN, or Low Dose Naltrexone – this is an opioid-blocking drug that in low doses is known to “modulate neuroinflammation” and help boost endorphins. Given I can't produce endorphins the natural ways through exercise, this seems to help with pain and energy levels. There is loads of information about this drug from the LDN Research Trust. The only side effects for most are vivid dreams, but in my experience these are not nightmares just dreams with extreme saturation. Dosage is tricky and takes quite a number of months to get right. There are online prescribing pharmacies that will help with access, as GPs are unlikely to want to prescribe off-license or off-label.

4) Hormone replacement therapy – I struggle with monthly crashes at the end of my luteal phase. Estrogen and progesterone seem to have helped – for a while – although dosage seems elusive and my GP can't seem to help or refer me to anybody who can. I'm seeking further help with my hormones outside of the NHS. To be honest, this is my greatest area of struggle to find appropriate treatment.

5) Magnesium spray / gel / bathsalts / pills – I take magnesium every night before sleeping. When my pain is particularly bad, I use topical magnesium. This really helps me sleep when pain is an issue, and just helps me sleep generally.

6) Oral rehydration salts – Luckily I don't have too much trouble with sugars, so I take a widely available commercial one. (There are other formulations that are sugar-free.) I often take these upon waking, when I have a bashed feeling. But I will take any time I feel extremely thirsty or drained.

7) H1 blocker antihistamines – I take H1 blocker antihistamines when I feel inflammation in my body. I don't fully understand the growing body of research about mast cell activation, viruses and the like but... they just work. And they are cheap with few side effects. I also take H1 blockers to help my mood pre-menstruation. Again, they just work.

8) High-quality Omega 3 – for my brain function. I can tell a difference when I'm not taking this. I'm sure there are sources of better information about this, so when in doubt about a brand, do some research!

9) Probiotics through my diet – I've recently been able to start having kefir and yoghurt. (Before I was having coconut kefir.) I've been taking smallish amounts of sauerkraut because of the histamine content. Sadly I overdid it with kimchi a couple of years back and seem to have triggered a capsaicin allergy. So I'm stuck with these ferments for now. I find that the better my gut health, the better I sleep. There is a one to one correlation.

10) Hyperbaric oxygen therapy – Every time I stop this, a couple of weeks or months pass and I feel worse. I have a very inexpensive charity oxygen centre nearby, and there is a lovely, warm community there full of people with different health conditions. But we're all there repeatedly because it simply works. The first time I did it, I slept so soundly. That effect wore off, but it definitely lifts my energy baseline. However, not recommended for those who struggle with breathing.

11) Perrin technique lymphatic drainage massage – I see an osteopath trained in this technique, designed for ME-CFS patients. I also do this drainage massage every night before sleeping. The technique is available online with YouTube videos. I felt relief straight away from this. Some mornings I do this, but with the main important pressure point reverting to the base of my skull on the back of my neck, instead between the sinuses.

12) Meditation / floor yoga / breathwork – I try to do these daily, especially to set a good tone for the day and feel like I'm listening to my body. I particularly recommend spoonie teacher Rachel at Santosha Spirit, or finding a spoonie instructor, as for me even the “easy” videos from popular instructors are too much to handle most days.

13) Cold showers or cold pack on the base of my neck – for when my autonomic system needs switching into parasympathetic mode. For wired and tired feeling, they do wonders.

I wish this list contained one thing that would give me back my energy or do away with my crashes. Although there are some clues here from ME-CFS patients.

Lastly, even though this list is very DIY, I strongly believe we need more research, more clinical trials of existing medication to help Long Covid.

Fingers crossed I will be taking part soon in a clinical trial for Remdesivir, one of the only antivirals that crosses the blood-brain barrier. I believe in the theory of viral persistence – that Covid or Covid fragments are still lingering in reservoirs in my body and brain wreaking havoc.