ME/CFS
Severe → much betterIll 4 years before improving or writingNeeds ongoing treatment
Severe ME/CFS, unable to read for three years, much better after somatic experiencing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've struggled with cfs since 2019.
In context ↗ - At worst: Severe
Addressing that and the therapy are slowly getting me from severe and bedbound to mild.
In context ↗ - Now: Much better
I am not where I was but it is easy to be grateful when I have so much back and when I can read again.
In context ↗
Read from 94 of their posts and comments; links to the 31 this page draws on
Summary
She became ill with ME/CFS in 2019 and was at her worst severe, unable to read for three years. Somatic experiencing therapy from 2021, then methylcobalamin and methylfolate after DNA tests showed methylation issues, helped her improve to moderate/mild with short flares. She works as a yoga teacher and had to drop legal advisor work; she still had POTS, which worsened on Vyvanse.
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What they tried
What they credit
somatic experiencing· Helped a lot · mainMethylcobalamin and methylfolate· Helped a lot · mainMethylcobalamin and methylfolate· Helped a lot · mainPCOSITOL· Helped a lotpacing· Helpedradical rest· Helpedliver supplements (milk thistle)· Helpediron supplement· Helpediron infusion· Helpedhigh protein intake· Helpedcod liver oil / vitamin A· Helped
Also tried
methylphenidate (Concerta)· Helpedvyvanse· Helpedvery minimal yoga and cardio· Helpedliquorice· HelpedH. pylori eradication meds· HelpedL glutamine· Helpedcreatine· Helpedbeta carotene· No changeDepo provera / hormonal contraceptives· Worseglutathione 50mg· Worsevit C· Worsecold water swimming / cold dips· Much worsezoloft and an SSNRI· Not saidwelltory· Not said
Their words about each treatment
- zoloft and an SSNRI · Not said
I went on zoloft and I think an SSNRI (I think) early on and that was when I was most incapacitated
In context ↗ - Depo provera / hormonal contraceptives · Worse
I had my worst brain fog, fatigue and depression while on Depo provera - it got much much better when I came off contraceptives
In context ↗ - somatic experiencing · Helped a lot
Doing it has really really helped and I went from more severe/moderate with flares that lasted weeks, to moderate/mild with short flares
In context ↗ - methylphenidate (Concerta) · Helped
I was on methylphenidate last year and felt it helped with POTS but not much with the fatigue
In context ↗ - Methylcobalamin and methylfolate · Helped a lot
I took Methylcobalmin - a usable form - for a month and pretty much have most of my brain back
In context ↗ - PCOSITOL · Helped a lot
Huge turnaround taking PCOSITOL, after years of endless brain fog and cognitive issues
In context ↗ - vyvanse · Helped
Vyvanse is better for the fatigue but I have definitely noticed the POTS worsen
In context ↗ - pacing · Helped
the crashes I still have tend to be minor now that I have gotten better at pacing
In context ↗ - radical rest · Helped
the more radical the rest I allowed myself, the more my flares abated in hours not days/weeks
In context ↗ - cold water swimming / cold dips · Much worse
I've noticed on 3 occasions that swimming in cold water precipitated getting sick and a huge crash
In context ↗ - very minimal yoga and cardio · Helped
I have been able to do very very minimal yoga and cardio and it actually helps me mostly
In context ↗ - glutathione 50mg · Worse
A doctor friend of mine recommended glutathione for CFS and I found a supplement of 50mg, and I took that and found no benefit
In context ↗ - vit C · Worse
I have hectic side effects from antioxidants - glutathione, vit C etc.
In context ↗ - liver supplements (milk thistle) · Helped
Liver supplements - milk thistle/vitamin A(see 4) helped alcohol intolerance and smoke and perfume intolerances.
In context ↗ - liquorice · Helped
I have had great success eating liquorice
In context ↗ - iron supplement · Helped
supplementing iron at around 75mg every second day with 1000ml water
In context ↗ - iron infusion · Helped
Getting an iron infusion, I haven’t had actually warm feet continuously like this in years
In context ↗ - H. pylori eradication meds · Helped
I took the meds and had an improvement in chronic nausea, but no improvement in fatigue
In context ↗ - high protein intake · Helped
have been doing much much better on high protein. It helps with energy and my sleep and my temperature regulation
In context ↗ - beta carotene · No change
It didn't help to take beta carotene
In context ↗ - cod liver oil / vitamin A · Helped
Cod liver oil has been the thing.
In context ↗ - L glutamine · Helped
taking L glutamine increased the amount of hours of deep sleep (according to my watch) that I got each night
In context ↗ - creatine · Helped
I have tried it and it helps with my energy levels, I don’t notice it mentally
In context ↗ - welltory · Not said
welltory thinks I am doing amazing because I am predominantly in parasympathetic
In context ↗
Approaches: Diet · Pacing · Radical rest · Supplements · Trauma & somatic work
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2019 | became ill with ME/CFS after working as a yoga teacher and legal advisorI've struggled with cfs since 2019.In context ↗ | Mild | |
| 2021 | severe and bedbound before starting treatmentAddressing that and the therapy are slowly getting me from severe and bedbound to mild.In context ↗ | Severe | |
| 2022 | weekly somatic experiencing therapy; flares shortenedI went from more severe/moderate with flares that lasted weeks, to moderate/mild with short flaresIn context ↗ | Moderate | Trauma work (EFT, EMDR, TRE) |
| March 2023 | cognitive improvement after about a month of methylated B vitamins and PCOSITOLI've just had a cognitive improvement after 4 years of being sickIn context ↗ | Moderate | |
| September 2023 | CFS mostly in remission, flares down to hours, POTS still badmy CFS has gone mostly into remission since doing a DNA test and discovering a bunch of issues with enzymes and supplementing for thatIn context ↗ | Mild | |
| May 2025 | ferritin found at 25, iron supplemented and later infused; returned to old selfI have pretty much returned to my old self, and have a few lingering symptoms that make my professional life hardIn context ↗ | Mild | Iron infusion / ferritin repletion |
| May 2026 | finished a Masters but still limited by dysautonomia and unable to workI just finished my Masters! ... I am not where I was but it is easy to be grateful when I have so much back and when I can read again.In context ↗ | Mild |
Adverse events
- Vitamin B12“having the right for of Vitamin b12 (Methylcobalmin) for around a month has made a HUGE difference on the cognitive stuff, though the other symptoms are still there and its seems the POTS is worse” In context ↗ Made symptoms worse
- Cryotherapy and cold exposure“I've noticed on 3 occasions that swimming in cold water precipitated getting sick and a huge crash” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“I have been able to do very very minimal yoga and cardio and it actually helps me mostly - with the exception of POTS which is much much worse” In context ↗ Made symptoms worse
- Glutathione“I have hectic side effects from antioxidants - glutathione, vit C etc. They make me feverish, sweaty especially while I sleep.” In context ↗ Side effects
- Vitamin B12“I definitely feel worse taking folic acid and cyanocobalamin” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“I did also feel more awake and alert on concerta, but also more shakey” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta), Lisdexamfetamine (Vyvanse, Elvanse)“I am now on Vyvanse and the POTS has gotten really bad” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“I notice it bad with anything more than 30, I will easily be up till 2am instead of asleep by 10,30” In context ↗ Insomnia from treatment
- Progestin-only birth control (mini pill, implant or shot)“I had my worst brain fog, fatigue and depression while on Depo provera - it got much much better when I came off contraceptives” In context ↗ Made symptoms worse
- “Yes but it was worse when I was trying to workout according to a schedule.” In context ↗ Made symptoms worse
- Glutamine“I get very bad intestinal cramps when I take it continuously, but it also helps my PEM and muscle soreness the next day, so I take it twice a week when I really need it” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHair lossHeadaches & migraineLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
the fatigue, PEM, and brain fog are so much better and pretty much gone
In context ↗ - Brain fog
went from planning to be an academic to being unable to read for 3 years
In context ↗ - Sleep problems
I do very little but still need 9 hours, which I struggle to get
In context ↗ - Pain & fibromyalgia
My flares tend to start with serious neckpain and stiffness
In context ↗ - Headaches & migraine
given way to a slightly different presentation with more headaches and POTS
In context ↗ - Gut problems
I took the meds and had an improvement in chronic nausea
In context ↗ - Light & noise sensitivity
I became much less light and sound sensitive
In context ↗ - Temperature regulation
I have issues with temp regulation since CFS
In context ↗ - Hair loss
Iron - body temperature, strength and physical energy, wound healing, hairloss, anxiety/depression.
In context ↗ - Anxiety & low mood
my worst brain fog, fatigue and depression while on Depo provera
In context ↗ - Muscle weakness
my muscles don't recover quickly and if I do multiple days in a row of the same or similar things I get weaker over time
In context ↗
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