I am not sure if it is a success story as such and has many caveats due to my own personal health problems.
I had ME for a couple of decades and just had a fleeting look at the literature every now and again - to find out nothing had advanced....so kept doing what seemed to worked for me, which was pacing and rest. For many years I had chosen to be on a low salt, low carb diet - not strict but just to maintain my weight as can't aerobically exercise. I also have hypothyroidism treated with a slightly higher thyroxine dose compared to normal as my endocrinologist thought it might help. Unclear if it did and now I am on a normal dose. I also have interstitial cystitis and constipation and had major symptoms of menopause that took a while to settle with HRT. I have always had low blood pressure, no symptoms until a couple of years ago.
A few years ago, I joined a local FB group of one of our main ME support providers. Many of the pwME were on electrolytes/compression stockings and many had had a good response. I thought golly I have been asleep at the wheel! Just to explain: the NZ health system is different from the UK, our GP's are private and independent of hospital specialists. Although they would probably consult NICE guidelines, they have the freedom to prescribe and recommend whatever they like for patients if they can justify it medicolegally, which includes what other GP's prescribe for their clients with ME, guidance from USA ME/CFS clinics eg Bateman Horne or a clinical study. We have few expert GP's in ME, very difficult to get a consult with them and they are expensive. Also to note many of the pwME from my FB group on this protocol were also on LDN which I am not interested in taking yet as I would prefer more research. Some also had diagnosed POTS and were on fludrocortisone.
I was having a lot of problems with my ME, dizziness, cognitive problems due to OI, in PEM for months etc and needing to spend all day in a recliner following having covid (omicron). I was very concerned if I did nothing I would stay in the recliner. My blood pressure was low, including the pulse pressure and my GP rang the hospital physician who said refer her to the Post Infectious Fatigue Clinic...which I waited for a appointment for 18 months then they cancelled it. I had a new GP and we decided I should first see a cardiologist to rule out heart problems due to covid. I had a normal NASA lean test, echo and ECG so he asked when was my last "decent walk" and advised exercise with their electrophysiologist which I declined.
My GP had not heard of this symptomatic treatment for Orthostatic Intolerance, so I explained it and she thought it was worth giving it a trial. So using Bateman Horne Clinic protocol I increased my salt, and fluids (electrolyte sachets) 2-3 L/day and compression stockings. I had to have thigh high medical grade stockings due to the frequent urination. She would monitor my electrolytes and renal function. I also got an abdominal binder but didn't feel I needed it later on. Once starting, all my dizziness and worst of my cognitive problems disappeared within days. I started being able to be more upright and get back to doing things I enjoyed. It was a revelation, I also got less urinary symptoms and constipation. I have considered some of this improvement may have been from mild dehydration but I don't think it is just that. My blood and pulse pressure improved and I am now normotensive.
So it did make a big impact on my functioning, not a miracle cure but I could be on my feet longer and go to the local shops on the bus but I still would get PEM if overdid it or with an infection and over the last few years I have become fully housebound and my OI is limiting (can't stand to cook for long and now rely on my partner to do major meal cooking). But I can now do a lot more than what I was doing, which was not a lot in my recliner/bed. I never could get the salt intake recommended, (some people take salt pills and I just didn't feel I could commit to that), so I probably take about half the recommended salt but the electrolytes definitely help cognitively and the OI (as well as improving bowel and bladder function).
One useful additional improvement was arthralgic knee pain which got severe and interfered with my rest when in PEM - this completely went, which I think was due to the support of the joint. I used to also get a leaden feeling in my calves when in PEM and this also disappeared. May have been due to supporting my aging veins but the reduction in pain is another motivation to put on my very tight compression stockings, first thing in the morning. When in PEM with low energy and strength, I use a donning device (Medi-butler) to help put on these compression stockings but when improved just need special grippy gloves. I buy electrolytes from the supermarket rather than getting the prescribed funded ones through my GP (oral rehydration salts) as they taste horrible to me. I can get electrolytes, with or without sugar and use a Waterminder App to monitor intake. It is hard to keep up a high salt diet so have decided to salt my food liberally and also drink salt rich vegetable juice (V8) with meals. It takes time and energy to learn the daily schedule of filling and cleaning drink bottles but I do feel the end justifies the means.
