Spontaneous Remission of ME/CFS in 2026
I believe I have been fortunate to have had a spontaneous remission of my ME/CFS symptoms. It has been a few weeks since I’ve felt a change.
I take the position, based on both published evidence and on numerous reports from people with ME/CFS that I have seen over the years, that the percentage of people who recover and return to full normal health is small and that ‘spontaneous recovery’ is almost unheard of.
Source: ME Association
Coincidence
It may be coincidental that this seemed to occur almost overnight after suffering from a stomach bug/virus that left me with no appetite, mild nausea and diarrhoea. I was effectively on small sips of water for 4 days, before gradually building up food again - chicken on day 5, a mini cucumber on day 6 and then a homemade curry and rice when feeling much better on day 7. I was also highly emotional and tearful during this time. Food was probably about 2500 calories over a period my body would typically/normally require 17,000.
This occurred during July, but prior to that i would describe my disability as moderate to severe, only moving to visit the bathroom, and to make one meal a day - almost always microwaved to save time and effort. The rest of my days were spent in a small dark room in a chair with an eye mask and noise-cancelling headphones within easy reach.
I felt like i was getting worse.
Symptoms
Alongside the audio and light intolerance, my nerves were firing, my calves felt like concrete yet tender and bruised. Brain fog was overwhelming and the general malaise and the sense of a flu about to take hold were a 24/7 occurrence. Headaches and general stabbing pains were rife. My heart rate was spiking, often over 100 at rest.
The need to rest and sleep was the only thing on my mind. Any food seemed to cause sweating, itching, a sense of my throat closing and a blocked nose and often lead to a crash or need to sleep - I limited food intake to evenings and one meal a day. At this point it has been several months since I had left my home, months without contact from friends. My only interactions were fleeting moments with my family.
Just before the bug i had become frustrated and intolerant of TV and podcasts too. Podcasts had been my way to pass time, listening but never really taking it in. My memory had been poor throughout from onset to this moment.
I felt completely at rock bottom.
During my bug, i was tearfully explaining to my wife how my mind was all over the place and i was spaced out and just in a dream like state all the time, such that i would sit and 3 hours would slip by, but it was different and my body felt different - I was unable to explain it any more coherently than that.
Research
My understanding and research suggest this remission may only be temporary and is part of the cyclical nature of this disease. People often report a boom and bust pattern within their illness and overdoing it can lead to a drop from mild to moderate or moderate to severe, the boom/bust comes often from the consequence of doing too much on better days causing a delayed taxation. There are cases where “treatments” like graded exercise have left people previously able to walk to push past their limits and end up in a wheelchair. The most severe sufferers rely on feeding tubes and are bedridden. CBT has often been associated with ME as a treatment but there is no good scientific evidence for this and it is a throwback to the misconception from psychiatrists blaming predominantly women for it being all in their head. There is nothing substantive regarding remissions.
Some people see improvement through pacing, effectively living within your battery envelope, like someone switching to low power mode and turning off Bluetooth and WiFi to massage their phone through the day. There is no charger for ME, yet around 40% can see some improvement that stabilises as a new baseline and through careful management can maintain aspects of their previous lives including working.
Some other anecdotal reports appear to suggest that following some supplement regimen or some expensive treatment that lacks any scientific basis can be a cure but most seem to be charlatans and scammers making the most of people who are desperate and underserved from traditional medicine and science. I mean when the leader of the free world suggests drinking bleach can cure covid, and the CDC in the US cannot be clear that there is no link between autism and expectant mothers using paracetamol, what can one expect?
Medication
During my period of remission, I’ve spoken to my GP (an indicator of my improvement) and I have a prescription to help with sleep and reducing excess stomach acid - one of my symptoms that forced me to sleep upright in a chair - I am now able to sleep in a bed.
I have also been taking a Vitamin D and a B12 supplement, throughout, alongside some H1 antihistamines for help with my MCAS symptoms - for which those symptoms have disappeared too since this incident.
My next experiment is to gradually reduce these to see if any symptoms return and hopefully stop.
Tests
For completion and transparency I have had regular and consistent tests that show my blood pressure, thyroid, B12 and other markers as all within the normal range. The only consistent outlier has been CRP to which shows some level of inflammation that was above range but not by a significant amount.
It’s well known that there is no indicative test for ME, yet, but there are a lot of symptoms that overlap with other conditions. Post-Exertional Malaise (PEM) is the key differentiator.
I had been diagnosed by my GP and by a specialist at an ME Clinic within the NHS.
If you feel like you might suffer from symptoms or are affected by this post, do speak to a medical professional. Explain the symptoms and get help and support.
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