In the category of "not helpful but interesting", I am sharing this paper decribing a research project which treated patients with Chronic Fatigue Syndrome and Fibromyalgia with B12 injections and oral folate. One interesting facet is that dose of B12 and folate is based on symptoms as reflected in clinician observations and patient report, which is often recommended for treatment of B12 deficiency. Also interesting is the connection between B12 and folate to neural symptoms. This is the link to the article:
I am pasting in a part of the "Conclusions" section of the paper
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Conclusions
Frequent injections of high-concentrated vitamin B12, combined with an individual daily dose of oral folic acid, may provide blood saturations high enough to be a remedy for good and safe relief in a subgroup of patients with ME/FM [Chronic Fatigue Syndrome/Fibromyalgia].
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Written by
WiscGuy
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In UK, a diagnosis of ME/CFS is supposed to be a diagnosis of exclusion, meaning all other possible diagnoses should be excluded before patient is diagnosed with ME/CFS. My experience was that this does not always happen.
ME Association website (UK charity for those with ME/CFS).
Interesting for many reasons.Worth noting that homocysteine level was found to be increased in cerebrospinal fluid- but not usually increased in blood. B12 found to be low - does not mention whether also differing blood/cerebrospinal fluid results. Does say results "suggested" a blockage of B12 transport over the blood brain barrier: ?
None of the patients had a PA diagnosis.
Oral B12 treatment: some responded, but not as well: optimal treatment was at least 1 injection a week. At the very least, this shows a positive response to higher frequencies and an acknowledgement that patients needs differ.
There was also recognition that frequent injections would not have been continued/ suffered if improvement level not significant. "Placebo effect" dismissed - and a noted return of symptoms when treatment curtailed.
This research does need a greater numbers of patients involved - but is useful because of the clinical observations over time. Might even help people who are struggling to improve or arrest deterioration on the bog-standard 2-3 months frequency - prompting a trial of more frequent injections ?
What a shame - as this research paper might well have helped her get more frequent injections, even as trial. Does she still have evidence that fibromyalgia and chronic fatigue were ever listed as symptoms ? Although a small-group experiment, it has well-documented evidence for a range of responses to long-term treatment - but significantly, optimal results with B12 injections of at least once a week (!)
Thank you so much for posting this, WisecGuy - one to keep !
Three generations of females in our family have been diagnosed with ME/CFS and three also with Hashimotos thyroid disease diagnosis, one with fibromyalgia.
It is a frustrating, ongoing battle but this and v. expensive gene tests, showing difficulty in absorbing B12, D, etc passed down the maternal line, gives me hope !
This is very interesting, I’ve been anemic for as long as I can remember. I was given iron meds but they never worked so that was that . I’m 61 now and was diagnosed last April with fibromyalgia/ME,CFS , I’m still anaemic but doctor told me I should be used to that by now so they’ve done absolutely nothing !! I’m going to try and get there B12 jabs and see if it helps as the fatigue is the worst thing imaginable. I take meds for the pain and they do help . Thank you , it’s another avenue to go down 💜
Always good to rule out low thyroid too. Have you been tested ? Being Hypo can cause poor gut absorption leaving you low in B12 - Folate - Ferritin - VitD.
Best to test B12 first before supplementing.
I was diagnosed with FM in 2000 and auto-immune thyroid in 2005 - Hashimotos. I also have a B12 issue due to extensive gut surgery.
Hi , yes I’ve had my thyroid tested , I had loads of tests before I got diagnosed I’m supposing they tested my B12 but will check first , thanks for that . I’m sorry you’ve had this disability for sooo long and along with other problems jezzz how on earth do you cope :((
They tested me for just about everything - except for the obvious one: B12
After a while I took vitamins and minerals and gradually improved.
Having been pretty well for some time I didn't take the supplements and gradually got worse again. It was so gradual I didn't really connect the two - but it's clear, looking back.
I now need daily injections and a host of vitamins and minerals.
That sounds great well done . I’ve started taking supplements a month ago , like you I didn’t take the before. The thing with fibro is it’s up and down so not really sure if it’s the supplements but I do seem to have had a better few weeks only time will tell . Good luck hope you stay on top and thank you
please remember that if you fail to get B12 injections ( and it is very difficult to get them because they are enormously expensive at about £1.00 each (yes one pound) you can get all the information here on how to inject and where to buy those Ampoules.
I agree as I have b12 and anema and gut issues, for last weeks gp taking no notice of gut and won't let me have a booster of b12 as hospital said I so run down that my b12 is due in 3 days they give it sooner neitger give nothing for anima gastro informmed they making hugh mistake as its all connect cant eat etc awful symtoms loss of weight exhausted due too acid relax and gut issues
There is a helpline number that PAS members can ring.
There's a lot more information I and others on the forum can pass onto you if you start your own thread. Click on blue pencil icon at top of screen to start your own thread.
I was long term anaemic and was finally diagnosed with coeliac disease, anaemia is one of the main symptoms , just saying because I wish I had been diagnosed sooner .
Thank you , I’m going to look into this too . It’s only since having fibromyalgia that I’m looking into Anaemia as the fatigue is terrible. It’s obviously not the main issue but if I can sort it it may help a bit
There seems to me to be an effect recognized by the paper's authors that is more difficult to pick out, because mention is scattered throughout the paper, and that is the amount of cobalamin injected, and the frequency of injections. I have extracted three excerpts and will insert them here:
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In Sweden, the common form of B12 injective substrate has for more than forty years been hydroxocobalamin, provided in 1 mL ampoules with 1 mg/mL. By the end of last century, also methylcobalamin became available, in 2 mL ampoules with 5 mg/mL; i.e. an ampoule of methylcobalamin contains ten times more cobalamin than an ampoule of hydroxocobalamin. ...
All but one (93%) of the Good responders were treated with methylcobalamin, while a significantly high proportion (43%) of Mild responders were using hydroxocobalamin (p<0.03). Moreover, Good responders had on average been treated with injections more frequently (interval 3.8±1.9 days) than Mild responders (interval 5.8±1.7 days). This difference was significant (p<0.03). ...
In summary, Good responders had significantly more often made use of the highly concentrated methylcobalamin preparation, which was used with yet more frequent injections, and in combination with higher daily doses of oral folic acid. Moreover, they were more often on treatment with thyroid hormones. Furthermore, none in this group was using prescribed strong analgesics, while a majority of Mild responders were using such analgesics on a daily basis.
I've been unwell all my life, and was diagnosed with ME at the age of 38. I felt a bit better after I started using NDT (for under-active thyroid) 19 years later. But, it wasn't until I started self-injecting B12 and taking folate about 9 years ago that I felt any real improvement.
I had been asking doctors for B12 injections because while I was travelling in SE Asia, I had got ill, and was given a B12 injection which helped me feel better than I had ever done. But of course, I was told by doctors here in the UK that my levels were "OK", so no need for injections.
"But of course, I was told by doctors here in the UK that my levels were "OK", so no need for injections."
If you start your own thread on the forum, there's a lot of info forum members can pass onto you that may help in getting B12 treatment from UK doctors.
Link about "What to do next" if B12 deficiency suspected
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Oral b12 or injections
High b12 with injections
Low Folate and B12 injections
Walking out of GP office with a referral to see a sleep specialist versus B12 levels and symptoms.
Oral B12 - with food or not?
