What constitutes healing of ME/CFS/FMS?

[Valentijn]

Important NB before you do the poll - 'compound' means on the same strand, according to @Valentijn. Sorry if all you gene genies know this - I didn't but then I'm a beginner with the SNP/methylation stuff!

Actually it would be on opposite strands, to have an effect. Otherwise the strand without any naughty mutations can compensate for the reduced function in the other strand.

 

[MeSci]

Actually it would be on opposite strands, to have an effect. Otherwise the strand without any naughty mutations can compensate for the reduced function in the other strand.

Corrected.

 

[xrunner]

I invite @Valentijn and any other interested parties to contribute ideas, definitions and so forth. To be able to talk about a cure we need to know what it means.

A cure to me personally means that my health has been fully restored and I don't need meds or supplements to feel well.
That may sound like utopia as there are probably many illnesses better placed than ME in terms of defined and effective treatments that are available but where a complete cure remains hard to achieve (eg. allergies, cancer, diabetes etc).

@Freddd, so if a treatment, regardless of whether you need to be on it continuously, make you feel cured, healthy or even close enough to it, that's got to be regarded as a blessing and I can't see why you can't claim it to be a cure for you and perhaps other people that may respond to it as you did.

In my personal circumstances, methylation hasn't been enough for my recovery as I had to treat Lyme and other infections as well, so my own story is more in agreement with @Valentijn's view.
I have now recovered to about 50% and being off all kinds of supplements for a very long time, as I have been pursuing a different line of treatment. I've been under severe stress physical and emotional for most of this year but I haven't crashed if anything I have had some improvements albeit small steps but I remain quite far off from being cured.
However this discussion has convinced me to resume my methylation protocol. I don't expect to be cured but I'm curious to see if there's still any upside from it for me.
So thanks for starting this thread.

 

[katemelissa]

I am reading everyone opinions with much interest.
A few years ago I was diagnosed with pernicious anemia and autoimmune gastritis so was prescribed hydroxycobalamin (all you can get on NHS). I found that hydroxy was useless for me and that a methylcobalamin infusion was so fantastic that within an hour of receiving it I was shocked to find that my ME/CFS symptoms reduced by 80%. I went on to Methylb12 injections and found that my symptoms stayed away (by this time it also included hypothyroidism which I had been managing with a dessicated for years as thyroxine was rubbish for me - I now have the best thyroid ever-cured with methylation!!!). I also found that taking methylfolate got rid of another load of symptoms and realised that all the organic food in the world was not doing me half as much good as these supplements (an Mthfr multivitamin, methylb12, methylfolate, carnitine, CQ10, R-lipoic acid to name but a few).
I have since tried so many time to take hydroxy (for obvious reasons) however I get VERY sick VERY quickly on it. I know that it isn't just PA as I get all my ME/CFS symptoms and my whole body is out of whack.
I am on methylation for life, (in spite of eating a fantastic diet)I have to have b12 due to PA, however I would love some tests to make sure I am doing as well as I feel I am. The NHS doesn't provide any so I will continue to search for these. I love this website it has been an inspiration to me...thanks to all.

 

[whodathunkit]

Great post, @katemelissa. I also love your avatar.

 

[katemelissa]

Thanks whodathunkit. I have never told anyone these things before as it is so complicated. I would just devour the internet (and pheonix rising) to try to get answers. It is nice to think there are others out there like me. I thought I was the only one.
Thanks for the encouragement, its is much appreciated.

 

[whodathunkit]

Yeah, people think you're on crack when you tell them about the mini-miracles that can occur with these supplements. But I also get a little nervous when telling "inexperienced" people about them, because so many people have an initial bad reaction I don't want anyone to blame me if they try them!

That's why I think that making it clear what side effects might happen is so crucial. IMO if more people had a bit better understanding of health and the healing entire process, they might be able to make better choices for themselves as far as how to proceed. Instead, we mostly (sometimes paternalistically) concentrate on telling people what to do or what not to do, instead of imparting "global" understanding of the whole process.

Sometimes going slow is definitely a key, as there is always a limit to what sides people can tolerate, but there's also the fact that if we are too cautious and don't push our limits, we'll never reach full our potentiality. It's a fine line, for sure.

 

[ljimbo423]

Have you all seen this poll/thread?

Important NB before you do the poll - 'compound' means on the same strand, according to @Valentijn. Sorry if all you gene genies know this - I didn't but then I'm a beginner with the SNP/methylation stuff!

EDIT: got it wrong - sorry, @Valentijn - compound means on opposite strands! Thanks for the correction and sorry for misquoting you. I said I was a beginner...

Thanks for posting that link MeSci. So far only 15 poeple have taken the poll, but 14 out the 15 that have taken it have at least one MTHFR mutation, that's 93.3%.

According to two of the leaders in research and treating MTHFR, Dr. Amy Yasko and Dr. Ben Lynch, only 40-45% of the population have the MTHFR mutation, so 93% from 40-45% is a huge difference.

This mirrors my experience in reading about 50 people's genetic profiles with CFS/FM at different forums in the last year or so and only 2 of them did not have at least one MTHFR mutation. That's about 96% of the genetic profiles I read of people with CFS/FM had at least one MTHFR mutation.

Here is the link to an on going poll of the percentage of people with CFS/FM that have MTHFR mutations. The poll is at the top of the page. All the best- Jim http://forums.phoenixrising.me/inde...thfr-mutations-do-you-have.31879/#post-491083

 

[katemelissa]

Hi Whodathunkit,
My sentiments exactly, I couldn't agree more. Normally, if someone were to ask my opinion I would usually advise against the 'do it yourself' approach as I know most people will not put in the groundwork required to make the difference to their own health in a safe and measured way...and you can get it wrong if you're not careful. (That's why I love this site, people are passionate and dedicated).

got my medical records and scrutinised every word of it, making sure I understood every test result etc. Then I started to change a few things, one at a time and very slowly (over years), so I could tell what was working and what wasn't. Some things happened by accident, like methylcobalamin for Pernicious Anemia, and other things took a bit more thought and research . However, the strange thing is, once you are your own expert, everything becomes very clear and so far I have been able to make a massive difference.

After that I was able to tell, by having conversations with doctors, which of them knew their stuff (and which ones didn't-believe me there are a few of those).
I believe it is up to us all to be comfortable with what we do with our own health. My situation is so strange, I don't think I will find anyone exactly like me so I would be the last to advise anyone...I just wanted to share my thoughts.

 

[Valentijn]

Thanks for posting that link MeSci. So far only 15 poeple have taken the poll, but 14 out the 15 that have taken it have at least one MTHFR mutation, that's 93.3%.

According to two of the leaders in research and treating MTHFR, Dr. Amy Yasko and Dr. Ben Lynch, only 40-45% of the population have the MTHFR mutation, so 93% from 40-45% is a huge difference.

Heterozygous A1298C has no impact unless there's another major missense mutation in the gene. Hence that's 27% right there to subtract from the total who have a genetic issue with MTHFR.

Additionally, you can't just add the two SNPs together, and compare it to the allele rate of a single SNP in the general population. I'd hoped to avoid doing the maths, but here goes.

C677T has a MAF of 32.5% in the general population. Approximately 10% of people will be homozygous for it and 44% will be heterozygous. 54% of the general population has a C677T mutation.

A1298C has a MAF of 22.8% in the general population. Approximately 5% of people will be homozygous for it and 35% will be heterozygous for it. 40% of the population has a A1298C mutation.

Because the two SNPs seem to be inherited entirely independent of each other, we can multiple the two values together to determine approximately how many people would have both mutations in each form:
C677T A1298C
Hom 10% 5%
Het 44% 35%
None 46% 60%

0.5% of people will be homozygous for both mutations.
3.5% will be homozygous for C677T and heterozygous for A1298C.
2.2% will be homozygous for A1298C and heterozygous for C677T.
15.4% will be heterozygous for C677T and A1298C.
6.0% will be homozygous for C677T with no A1298 mutation.
2.3% will be homozygous for A1298C with no C677T mutation.
26.4% will be heterozygous for C677T with no A1298C mutation.
16.1% will be heterozygous for A1298C with no C677T mutation.
27.6% will have no C677T or A1298C mutations.

Hence nearly 75% of the general population has at least one of these mutations. And if we subtract the heterozygous and homozygous A1298C combined with no C677C mutation (because it has no impact), that's about 54% of the general population with a meaningful MTHFR mutation.

If we look at the data I posted for 18 ME patients at http://forums.phoenixrising.me/inde...thfr-mutations-do-you-have.31879/#post-491074 only 10 out of those 18 have a MTHFR mutations which are capable of causing an impact. That's 56% - yes, a whole 2% higher than the expected prevalence.

Unfortunately the poll in that thread was flawed at the outset - there was no option for having neither mutation, and the homozygous-heterozygous options are still not present. But even if taking the poll at face value, it's still just 60% of presumed ME/CFS responders who have a significant mutation.

 

[ljimbo423]

Heterozygous A1298C has no impact unless there's another major missense mutation in the gene. Hence that's 27% right there to subtract from the total who have a genetic issue with MTHFR.

Additionally, you can't just add the two SNPs together, and compare it to the allele rate of a single SNP in the general population. I'd hoped to avoid doing the maths, but here goes.

C677T has a MAF of 32.5% in the general population. Approximately 10% of people will be homozygous for it and 44% will be heterozygous. 54% of the general population has a C677T mutation.

A1298C has a MAF of 22.8% in the general population. Approximately 5% of people will be homozygous for it and 35% will be heterozygous for it. 40% of the population has a A1298C mutation.

Because the two SNPs seem to be inherited entirely independent of each other, we can multiple the two values together to determine approximately how many people would have both mutations in each form:
C677T A1298C
Hom 10% 5%
Het 44% 35%
None 46% 60%

0.5% of people will be homozygous for both mutations.
3.5% will be homozygous for C677T and heterozygous for A1298C.
2.2% will be homozygous for A1298C and heterozygous for C677T.
15.4% will be heterozygous for C677T and A1298C.
6.0% will be homozygous for C677T with no A1298 mutation.
2.3% will be homozygous for A1298C with no C677T mutation.
26.4% will be heterozygous for C677T with no A1298C mutation.
16.1% will be heterozygous for A1298C with no C677T mutation.
27.6% will have no C677T or A1298C mutations.

Hence nearly 75% of the general population has at least one of these mutations. And if we subtract the heterozygous and homozygous A1298C combined with no C677C mutation (because it has no impact), that's about 54% of the general population with a meaningful MTHFR mutation.

If we look at the data I posted for 18 ME patients at http://forums.phoenixrising.me/inde...thfr-mutations-do-you-have.31879/#post-491074 only 10 out of those 18 have a MTHFR mutations which are capable of causing an impact. That's 56% - yes, a whole 2% higher than the expected prevalence.

Unfortunately the poll in that thread was flawed at the outset - there was no option for having neither mutation, and the homozygous-heterozygous options are still not present. But even if taking the poll at face value, it's still just 60% of presumed ME/CFS responders who have a significant mutation.


15.4% of people will be heterozygous for both mutations.

Hi Valentijn- Dr. Ben lynch, who has a bachelor of science degree in Cell and Molecular Biology and a doctorate in naturopathic medicine. Has been researching MTHFR variations, there effect on people and treating patients with MTHFR variations for years, and researches almost daily.

He says that the science does not support 1298 as a problem, but his personal experience has been just the opposite. He has seen and treated many people with the 1298 variant that are profoundly ill.

I believe this is a case where science hasn't caught up to reality and what is happening in real life, ie: people having the 1298 mutation, being profoundly ill from under-methylation, being treated for under-methylation and returning to good health. Dr. Ben lynch says he see's this "all the time" in his practice, people being very ill with the 1298 variant and returning to good health once they are treated for under-methylation.

When I add my own personal health breakthrough treating methylation, I am more convinced than ever of how methylation problems can absolutely devastate ones life. I am not here to try to change your mind, I just have a different view of the 1298 variant and the problems it can cause. All the best Jim.........

 

[Valentijn]

Hi Valentijn- Dr. Ben lynch, who has a bachelor of science degree in Cell and Molecular Biology and a doctorate in naturopathic medicine. Has been researching MTHFR variations, there effect on people and treating patients with MTHFR variations for years, and researches almost daily.

He says that the science does not support 1298 as a problem, but his personal experience has been just the opposite. He has seen and treated many people with the 1298 variant that are profoundly ill.

That's nice, but there's a reason that science values published research over what some guy thinks. As human beings we tend to perceive things in a manner which isn't always objective. Using the scientific method, and controls, and other basic principles means that we can be sure that what we think we're seeing is really what's in front of us.

Given that 40% of the general population has some form of A1298C mutation, I'd imagine that about 40% of people with any disease have it. That's a large percentage, but it doesn't make it significant since 40% of perfectly healthy people have it as well.

 

[ljimbo423]

@Valentijn - Dr. Lynch is not the only doctor seeing patients with the 1298 variant that are very sick and recover after methylation treatment, there are many that I know of and I am sure many more that I don't know of. The teller of all truth will win this disagreement- that is TIME. Take care. : )

 

[Valentijn]

@Valentijn - Dr. Lynch is not the only doctor seeing patients with the 1298 variant that are very sick and recover after methylation treatment, there are many that I know of and I am sure many more that I don't know of. The teller of all truth will win this disagreement- that is TIME. Take care. : )

That just means that the treatment (usually folate and B12) is helpful - that doesn't prove that these SNPs are causing serious problems themselves.

 

[MeSci]

@Valentijn - Dr. Lynch is not the only doctor seeing patients with the 1298 variant that are very sick and recover after methylation treatment, there are many that I know of and I am sure many more that I don't know of. The teller of all truth will win this disagreement- that is TIME. Take care. : )

To compare like with like, I would like to see what percentage of these doctors' patients have the 1298 variant (and is it homozygous or heterozygous?) but are well. This could be hard to establish, as healthy people do not often go to the doctor!

 

[ljimbo423]

To compare like with like, I would like to see what percentage of these doctors' patients have the 1298 variant (and is it homozygous or heterozygous?) but are well. This could be hard to establish, as healthy people do not often go to the doctor!

I think there are many poeple with the 1298 variant as well as other variants that are well or have minor symptoms. It's my understanding that it usually takes genetics AND lifestyle (epigenetics) to causes symptoms. So if someone leads a very healthy low stress life they are much less likely to become ill. Lifestyle certainly played a big role in me getting ill, but I don't believe it was the only cause.

 

[MeSci]

I think there are many poeple with the 1298 variant as well as other variants that are well or have minor symptoms. It's my understanding that it usually takes genetics AND lifestyle (epigenetics) to causes symptoms. So if someone leads a very healthy low stress life they are much less likely to become ill. Lifestyle certainly played a big role in me getting ill, but I don't believe it was the only cause.

Yes - it is accepted fact that almost every illness is dependent on a combination of genetic and environmental factors. But, if a gene variant predisposes one to a particular illness, one would expect a difference to show up in a comparison between healthy people and those with the illness in a representative cohort of people, e.g. a primary care doctor's patients. Those with the predisposing gene should show a higher incidence of the illness than those without the predisposing gene/those with the illness might be expected to have a higher incidence of the gene variant than those without the illness.

 

[ljimbo423]

Yes - it is accepted fact that almost every illness is dependent on a combination of genetic and environmental factors. But, if a gene variant predisposes one to a particular illness, one would expect a difference to show up in a comparison between healthy people and those with the illness in a representative cohort of people, e.g. a primary care doctor's patients. Those with the predisposing gene should show a higher incidence of the illness than those without the predisposing gene/those with the illness might be expected to have a higher incidence of the gene variant than those without the illness.

Point taken and well made! I am very interested in the on-going poll here for MTHFR mutations. So far 17 out of 18 people have at least one mutation and I expect it to stay some where around 95%, but time will tell.

 

[sueami]

Actually it would be on opposite strands, to have an effect. Otherwise the strand without any naughty mutations can compensate for the reduced function in the other strand.

I totally do not want to derail this discussion, but I really wanted to verify how to tell whether one's mutations are on the same strand or different strand.

When reading snp results, there's a column that indicates "risk allele" and the following column for "your alleles" has two letters. So does it follow that those are in a specific order that indicates the same gene strand orientation consistently throughout all results?

And if that is the case, then a reading of " G GT " for one snp and " A AT " for the second snp would indicate that my mutations are on the same strand and that they have a lesser/no impact on folate processing?

I couldn't find any reference to strand orientation in interpreting mthfr results on the web, but perhaps I need to refine my search terms.

Thanks, Valentijn for bringing this up. I'll need to edit my poll response, depending on your reply.

 

[Valentijn]

When reading snp results, there's a column that indicates "risk allele" and the following column for "your alleles" has two letters. So does it follow that those are in a specific order that indicates the same gene strand orientation consistently throughout all results?

23andMe results are always in alphabetical order.

If you have your parents' results, sometimes you can determine if your heterozygous mutations are on opposite strands.