I’ve been thinking about this “Folate Deficiency Anaemia” and how likely it is to be the cause of my problems instead of ME.
It just doesn’t make sense. One thing I CAN agree with the doctor about is that I COULD have ME (they only ever call it CFS but I hate that name as it trivialises the disease and sounds to most people that its just about “being tired all the time”) AND Folate Deficiency Anaemia, and the anaemia makes my ME symptoms worse. There is no argument about my level of folate, it is significantly lower than the lowest expected level. This may then cause worsening of my symptoms if I have both – but when did the anaemia start? Did anything “cause” it or is it simply diet related?
The biggest two issues though, and the things that make no sense if the anaemia is the actual cause, and not just a “freebie extra” are Fluctuation, and Post Exertional Malaise.
ME is known to be a fluctuating condition. The severity of symptoms can vary day by day, week by week, month by month, year by year etc. I have definitely experienced this myself. Over the last few years my symptoms have come and gone. At times making me wonder if it was all in my head (a belief that many medical professionals would still prefer we accept), and then like the last 3 weeks or so when it has impacted every aspect of my life. Try as I might, I cannot find a single reference to Anaemias being fluctuating like this, and it wouldn’t really make sense for them to be either. If I have fatigue and other symptoms due to a deficiency of folate (Vitamin B9) then surely – the deficiency would be rather consistent – and thus the symptoms consistent in the main. This ties up with the fact it takes roughly 4 months of taking Folic Acid for things to be expected to get back to normal. This is due to the deficiency affecting the quality and/or number of red blood cells in your blood and dependant on the life span of red blood cells – which is around 3 months. The deformed red blood cells would have to die off and be replaced for things to get back to normal. Defective red blood cells may have significantly lower lifespans but they don’t just “die in a day”. With supplements (in this case 5mg Folic Acid per day) you would expect it to gradually improve over time – but it wouldn’t “fluctuate” back and forth in the way that ME does, and in a way I have experienced.
Even more of an indication is PEM (Post Exertional Malaise). This is pretty much the signature symptom for ME. To quote from MEpedia.org (https://me-pedia.org/wiki/Post-exertional_malaise)
“Post-exertional malaise (PEM) refers to a worsening of ME/CFS symptoms after minimal physical or mental exertion,[1][2] which can be delayed 24-72 hours or more.[3][4][5][6] PEM is considered to be the hallmark symptom of ME/CFS, and is uncommon in other illnesses known to cause chronic fatigue.[7][8] While in most diseases patients experience symptom relief after exercise,[9][10][11][12] the opposite is true for ME/CFS patients for whom even minimal exertion can cause a symptom flare-up.[13]“
To give an example of PEM I have experienced recently myself, I could talk about the incident last Monday where I went for a short 15-30 min walk very slow paced and then a quick trip (15) mins to ASDA after work. After the event I can clearly see that I had done too much – but following this event – I had to take the next 2 days off work as I was totally drained and in a lot of pain (body aches like a bad flu). As well as 2 days off work – mostly in bed the whole time – I also had to significantly reduce the work I did on the Thursday and Friday following this.
PEM is not mentioned anywhere with relation to Folate deficiency. It is a signature ME symptom. It is also sometimes present with Multiple Sclerosis.
Unless I have missed something despite my searching, If I have PEM, the indications are very strong that I don’t “just” have folate deficiency, and the most likely explanation is ME in addition to low folate (which may or may not be severe enough to cause Folate Deficiency Anaemia.
I maintain still that I am now being forced to wait 4 months with nothing else done. While this may not make much difference to treatment as there is no really effective treatment for ME, it DOES lengthen the time for a diagnosis which may be critical to being able to renegotiate my hours or working environment and maintain my job.
As things stand right at this moment, If I stay the same as I have been the last 3 weeks – it will be a definite challenge to stay working full time until this “trial” of Folic Acid is completed. If something changes at work and I am forced to go back into the office then I can say without a shadow of doubt that I will not be able to do that as things are at the moment. This will either lead to me cutting my hours down – maybe 3 days a week instead of 5 so I don’t have to get to work 5 days a week and can rest the other 2 days (this will still be spending the weekend and 2 other days – to enable me to work 3 days!). Just as likely I would have to just “give up work” and start taking my work’s pension – which would be VERY small if I take it at 55 (which I can’t do till next Jan anyway).
I desperately need either a cure (if this is JUST folate levels which I cannot currently accept then this may well be solved with the Folic Acid), or a diagnosis that can help me negotiate with work – or my pension or even the DWP to claim PIP.
