Trying Again. What First? D-Ribose? BCAA's?

[Invisible Woman]

I don't know what these doctors actually test for but there is no evidence that any supplements are actually helpful for ME.

I agree.

However, I got caught in a logic loop. I developed ME and then, more or less accidentally, discovered I am actually deficient in and struggle to absorb certain things. When these deficiencies are addressed weird symptoms that pre date the ME disappear. When I stop supplementing the symptoms come back.

So, apart from possibly placing my "system" under a bit of additional stress, these deficiencies are probably nothing to do with ME and I suspect predate it.

It was actually someone specializing in allergies that helped me in this regard, not an ME specialist who referred.

However, because the deficiency was identified after the ME diagnosis I do find doctors confuse the two and tell me that ME doesn't cause it, when I never said it did, and therefore it's bunkum. The NHS won't pay because ME doesn't cause these deficiencies, though they might have paid if the deficiency had been diagnosed and addressed before I was diagnosed with ME.

 

[Jonathan Edwards]

If you think those supplements are junk, you may wish to discuss with two of the doctors in the UK who see / treat ME patients, Dr Weir and Dr Bansal, as I believe both have recommended such supplements to patients. My opinion is neither here nor there and I don’t take any of these things, but just thought I’d mention.

I know Willy and Amolak very well. If they prescribe supplements then I guess what I have said still applies. It does not greatly surprise me.

 

[Jenny TipsforME]

@Invisible Woman I’ve had my whole genome sequenced and it looks like I’ve been dealt a bad hand genetically in terms of tendency to not absorb several vitamins. I have potential difficulty with 7 vitamins and 85%+ population have greater genetic ability to absorb 5 vitamins than me. And eg for Vitamin D I have 9 variants contributing to this issue and none which are protective. I have had a low vitamin D result in the past (despite supplementing and sunbathing) but most of these vitamins I haven’t been tested for. Taking higher dose supplement (but no sunshine) a more recent D result was fine.

I don’t know if these genetic tendencies are technically completely separate from ME symptoms in my case, but I’m guessing it won’t help my overall health. It might also explain why I’m pro trying supplements and some people think they’re a waste of money!

And just because we can buy it over the counter without a prescription, doesn't mean it's safe.

Oh yes this isn’t what I meant at all. I meant just because something is a supplement doesn’t make it a nutty, almost spiritual choice. It’s just on a spectrum of substances people take which hasn’t met criteria to require a prescription. Supplements can cause side effects and can interact with prescription drugs.

supplement manufacturers make misleading claims about the very content of their products let alone the alleged health benefits.

Misleading claims are definitely a problem but it isn’t always insurmountable. Eg look up a supplement on examine.com and if convinced it’s worth trying buy from a reputable company which tests its products.

I was upset by a few of the comments on this thread because they seemed dismissive of the context people are in buying supplements. It made me feel like I should be embarrassed to be buying supplements. But ME research has been so poor and so slow and people are so sick, it seems to me a completely sane response for us to be trying out what we can (safely) for ourselves.

Unfortunately it doesn’t feel the best plan to wait until there are specific, well designed ME trials on relevant supplements before trying them. That day probably will never come. If a supplement is affordable for you, you trust it is what it says it is (testing), there aren’t bad side effects or interactions with other things you’re taking, there seems to be biological reasons why this supplement could work and other people give positive anecdotal feedback, it seems like it would be worth buying at least once.

 

[Trish]

Hi @Jenny TipsforME .

I'm sorry you have been upset by some of the comments. I don't think people are saying you shouldn't take the supplements you have clearly researched carefully, including finding out about possible side effects and problems, have tested them on yourself and feel they really help, and in particular if you have evidence from blood or DNA tests etc that a particular supplement may help you. In the end we all do whatever we find helps us best.

The problem comes when people share that information in a way that suggests it will be good for someone else to take when we know nothing about their circumstances - financial, biomedical, genetic or whatever.
And most of the supplements, herbs or other over the counter substances recommended by some ME doctors have not undergone the sort of large double blind clinical trials we expect for drug treatments for ME, so we can't say for sure whether they are any use specifically for ME.

That's why we have a rule about not asking for or giving medical advice (Rule 5: No medical advice). This does make us different from other forums, and I for one am grateful for that.

 

[Jenny TipsforME]

@Trish so how does Rule 5 fit with a thread like this? I wouldn’t interpret sharing experiences of supplements as medical advice (because anyone can buy supplements, we’re not suggesting diagnoses and Squeezy has asked for our opinions).

I read it that some people are saying we shouldn’t be taking supplements. Is that medical advice? I do understand why people are prickly over this issue, but it seems to as much veer into dodgy Rule 5 territory to suggest people are wasting money on supplements they feel do benefit them. ‘Shouldn’t’ can feel as difficult as ‘should’.

 

[Hutan]

That's an interesting point @Jenny TipsforME. I guess we have a 'first do no harm' bias, so a statement that taking no supplements is a wise course of action when there is no solid evidence to support taking supplements is acceptable. However, a directive to take a supplement when there is no solid evidence to support taking it is not.

I think it's a matter of consequences. Taking a supplement involves the cost of buying it and possible negative effects. I remember a case where a mother in difficult circumstances felt very guilty that she couldn't afford to buy for her sick child a range of supplements that were recommended on a forum, when there was no solid evidence that the supplements would help.

I agree that there is a big difference between saying that a supplement has been useful for you (acceptable) and saying someone else should take it (not acceptable).

Edited for grammar

 

[TiredSam]

Yes, you can afford not to try because all that stuff about targeted supplementation is almost certainly nonsense. There are no ME doctors who know which supplements to recommend for ME. Any doctor who does is a phoney. I personally think it is very unlikely that any supplements are relevant, unless you have a risk of low vitamin D from never going outside.

One of the great things about this forum is that it is not a phoney medicine swap shop like a lot of others. I don't have any answers but the way to save money and optimise health is to steer clear of all this stuff I think.

That has been exactly my approach. I will be coming up to 5 years of ME at the end of this year. I've been keeping daily data for the last 3.5 years, and after reviewing it and how I have been doing this year I think I'm ready to claim that I have significantly improved, and may write about it once my 5-year MEversary has been reached. I have basically done it with pacing alone and avoiding time and money-consuming wild-goose chases, which are just as likely to lead to significant deterioration, and have done in many cases. Sometimes doing nothing is best, even if it's hard and feels like shit.

Usual disclaimer applies - just because I have improved with pacing doesn't mean I think anyone else could or should, and if people want to discuss and try out supplements it's up the them, I wouldn't judge anyone in the horrible situation we find ourselves in, especially those who have been more ill and for longer than I have.

 

[TiredSam]

And with my moderator's hat on:

Rule 11: No discussion of events which occur on other forums
While it is permitted to generally mention other ME/CFS patient forums, it is not permitted to discuss events occurring on those forums, or the actions or statements made by members on those forums.

Discussing supplements on their own merits and exchanging personal experiences is fine of course, but there is no need for any reference to other forums. All references to other forums will be removed from this thread, as they are not relevant and likely to lead to Rule 11 breaches (in fact they already have, unsurprisingly).

 

[Invisible Woman]

I was upset by a few of the comments on this thread because they seemed dismissive of the context people are in buying supplements. It made me feel like I should be embarrassed to be buying supplements. But ME research has been so poor and so slow and people are so sick, it seems to me a completely sane response for us to be trying out what we can (safely) for ourselves.

I am certainly not dismissing other people's choices in how they treat their ME. If they choose and have the time, energy, funds to try supplements that's their decision. If they want to discuss how supplements help them,personally, also fine.

However, I would also say that over the years I have been pressured by people into trying things. They got upset when I wouldn't. I was already taking supplements as recommended by someone who knew exactly what they were doing, but apparently that wasn't good enough. Nope, supplement X helped them enormously. i should try it, don't I want to get better?

I prefer a middle ground. Sure we can discuss what helps, but where there is no scientific evidence to backup a claim we need to be clear about that. We also need to be aware that a lack of scientific evidence may just mean nobody has looked at something yet. As they say, absence of evidence is not evidence of absence.

I’ve had my whole genome sequenced and it looks like I’ve been dealt a bad hand genetically in terms of tendency to not absorb several vitamins.

Like me, you are fortunate to have the resources to undertake this level of investigation. Not everyone does, so they're going in blind. I have seen people who can't pay their rent spend good money on supplements, purely because someone else said it had helped them. No further information like, what symptoms it helped, if testing is involved.

You and I may look up contraindications, but not everyone does. Or the knowledge of contraindications may simply not be there.

Personally, when trying to make my own mind up about something, I want to hear the good and the bad. Only then do I feel I can make an informed choice.

 

[Evergreen]

If you think those supplements are junk, you may wish to discuss with two of the doctors in the UK who see / treat ME patients, Dr Weir and Dr Bansal, as I believe both have recommended such supplements to patients. My opinion is neither here nor there and I don’t take any of these things, but just thought I’d mention.

I know Willy and Amolak very well. If they prescribe supplements then I guess what I have said still applies. It does not greatly surprise me.

Wanted to step in here to say that my personal experience with Dr William Weir was that he suggested supplements that were well within what I would consider mainstream use. For me, he suggested:

Testing vitamin D levels and supplementing if low – seems entirely reasonable for a housebound patient. My test was slightly low and my GP agreed I should supplement, just at a nice normal level, and we retest once or twice a year. Dr Weir was also mindful that there was MS in my family.

Probiotic – I had just finished 3 months of an antibiotic for a skin condition, and had chronic gastrointestinal symptoms after an infection, so again, I think this was reasonable to suggest.

Trial of fish oil and continue if it helps – he referenced that there was low-level evidence that it might help some people with ME, I believe that this is detailed in the purple booklet which I don’t have to hand.

That’s it. In 5 years of input.

From my experience, Dr Weir's recommendations are not in the category that I think this thread is about.

 

[Arnie Pye]

I've rarely treated myself with anything that isn't mainstream i.e. vitamins, minerals and fish oil mostly, but there have been a few forays into the weird and wonderful if I thought it was worth my while, it wasn't obviously dangerous, I was desperate enough, and the price was something I was prepared to pay.

As far as mainstream stuff goes, my feeling is that if I find out my vitamin D is low (for example) then I want to improve it, and this has nothing to do with ME or any other health conditions I might have, I just think having optimal vitamin D is good for me. I'm very careful to look up reasons for NOT taking something, the dangers of over-dosing, the dangers or symptoms of having a result which is too high or too low before I take anything.

Personally I would sometimes be interested in knowing what people thought of my plans to take supplement A for reason X. But because of the forum rules (which I do forget sometimes) I feel inhibited about asking for feedback or people's experiences of taking supplement A for reason X or any other reason.

One of my weird and wonderful experiments is failing me at the moment. I read about benfotiamine helping people by improving energy levels. The bottle arrived on Monday morning, and so far I've only taken three. Headaches are much, much more severe than usual, and energy levels are worse than ever. Time to call a halt and see whether the headaches return to my normal severity. *sigh* It's probably for the best though. They were too expensive for more than short-term use.

 

[Invisible Woman]

I have asked, a couple of times I think, for feedback and opinion from people who tried, or considered something. It's been very useful.

As long as the question isn't seeking medical advice and the responses are clearly anecdotal and avoid giving specific medical advice, it is fine. As far as I'm aware.

Even just prefacing with phrases like "in my personal experience", "this may not be right for others kind of thing" can help.

Obviously saying something like "you should definitely try this" or would be crossing the line.

 

[TigerLilea]

that you can actually cause deficiencies by taking supplements you don't need - especially mega dosing.

I was going to mention about the mega dosing, also. I am guilty of having done this in the past, however, the more I read about it, the more I'm starting to realize that it is a bad idea based on very poor science. When you take very high doses of a few vitamins, minerals, or supplements, you run the risk of putting all of the others completely out of balance within your body. I've been taking B-complex but have cut the tablets into quarters so that I am getting something closer to what the body would need in a day instead of mega doses. Being on a somewhat restricted diet right now for health reasons, I plan on switching to a multi-vitamin and doing the same thing.

 

[TigerLilea]

and if I could write a letter to my newly diagnosed self, I'd probably mention that and save myself lots of money.

I love that! I've spent (wasted) thousands of dollars over the past 27 years on vitamins, minerals, and supplements that did absolutely nothing for me. In fact, some of them made me worse. Older me could definitely have taught younger me a few things over the years.

 

[Jonathan Edwards]

My guess is that people with ME in the UK probably spend about £50million on supplements a year. That is enough to run twenty five £10million five year grants simultaneously. We don't even have that number of research departments to give that sort of money to. So maybe it should be five £50million grants. Nobody would know what to do with all the money, not even Chris Ponting. Every experiment anyone could think of could be done, including PET scans and genetics.

I don't think anyone is saying that nobody should take supplements. But if there is every reason to think they do nothing for ME then I think that is worth emphasising, precisely because people feel pressurised into using them.

 

[Invisible Woman]

I wish that I could go back in time and gather up all that money I wasted and give it to someone like the ME Biobank.

 

[Squeezy]

So many people have raised excellent points to consider, on both sides of the fence. It's very interesting, thank you all.

Wow, I have felt enormous pressure NOT to use any supplements - because I'm NOT REALLY ILL, YOU KNOW! Just PUSH yourself, woman.

For my part, I have avoided all but a sensible one-a-day multivitamin for most of my illness because I'm a MASSIVE sceptic. With limited funds.

For people eating a good balanced diet, Bravo! No need for balanced multivitamins for you, as @Jonathan Edwards says. But truly, no one evolved to eat the kind of limited, repetitive, weird diet that some of us do. I've had my diet analysed by a registered dietician, and it's RUBBISH. That's offical.

My appetite is bad from my migraine med. I just can't eat enough. I'm too tired to cook. Or chew, some days. I honestly don't understand how @Jonathan Edwards can tell me, a mostly housebound ME patient, that I should get all my nutritional needs met from my diet! WITHOUT KNOWING ANYTHING ABOUT IT!

In addition to this problem: Everybody, if you take prescription medication, it could be depleting the way your body is able to utilise vitamins and minerals!

There are MANY medications which deplete vitamins and minerals in the body. This is a FACT. Anti-convulsants, anti-depressants, metformin, statins... Antibiotics, even. I think that everyone should check their meds . Doctors rarely tell you, nor does the patient information sheet.

Upon learning about this, I consulted a pharmacist and a dietician. My prescription medications, together with my limited diet, mean that decent supplementation is vital. Most one a day multis aren't balanced correctly for my needs.

I'm still interested in trying a couple of "alternative" things. If anyone wants to discuss their experience with BCAA's - when they find it's best to take, in regard to activity and recuperation, where to buy - please PM me if you prefer

 

[Jonathan Edwards]

I honestly don't understand how @Jonathan Edwards can tell me, a mostly housebound ME patient, that I should get all my nutritional needs met from my diet! WITHOUT KNOWING ANYTHING ABOUT IT!

In addition to this problem: Everybody, if you take prescription medication, it could be depleting the way your body is able to utilise vitamins and minerals!

It is pretty easy because it is really quite hard to be short of basic requirements. If someone is short of vitamin C then to my mind the answer is to eat some fruit. You are obviously at liberty to do whatever you like but the idea that supplements are needed at all is as far as I know almost entirely a myth put about by people wanting to sell stuff, including pharmacists and dietitian (selling unnecessary advice). A few drugs increase requirements for vitamins but you were talking about things like ribose and carnitine and as far as I know nobody needs to use these.

I don't want to sound unsympathetic but the people selling this stuff have such a huge hold over the community that I think they need to be called out, just as I think Simon Wessely and his friends need calling out.

 

[Trish]

My appetite is bad from my migraine med. I just can't eat enough. I'm too tired to cook. Or chew, some days.

It is pretty easy because it is really quite hard to be short of basic requirements. If someone is short of vitamin C then to my mind the answer is to eat some fruit.

I have a lot of sympathy for people with ME who find it difficult to eat a balanced diet. Some of us suffer from constant nausea, some have food sensitivities, some don't have the energy to chew food, let alone prepare it.

Chewing an apple is hard work, as is peeling an orange - I can't remember when I last did so. That's why I buy bottles of fruit smoothie for my daughter to give her some chance of getting some fruit, and buy myself bags of frozen berries to have with yoghurt. But all that's expensive.

As for vegetables, neither of us has the energy to prepare fresh veg most days, and frozen ones taste like soggy cardboard, and require more effort to cook than I can often manage. My solution to that is vegetable soups, but that either means tinned which has probably lost most of its vitamins, or paying someone to make big pots using fresh veg we can freeze and reheat in the microwave. Paying someone to make soup is a ridiculous luxury most can't afford.

As to putting together a nice plate of fresh salad for the two of us, that's often my energetic activity of the day! And then I sometimes haven't got the energy to eat it. We use far more frozen ready meals than I'd like to, but we have no choice.

I am in the fortunate position of being able to afford to spend more on food than a lot of pwME are, especially those alone and on benefits. We do what we can, but a balanced diet can be really hard to achieve.

 

[Invisible Woman]

I think the practicalities of such a restricted life can only have a negative impact on digestion. As @Trish says there's the difficulties in preparing fresh, healthy meals, the difficulties some have actually eating, the difficulties many of us have with digestion (which may, or may not be part of ME).

I also wonder at the effect lack of movement has, especially on the people who are often bedbound. This slows the progress of the gut content, possibly impairing it's ability to absorb nutrients at that stage of digestion.

In addition there are those who, even when nutrients are available in abundance, seem unable to digest them. In my own case iron is a particular problem, though I'm told the iron molecule is quite large and so difficult generally to absorb.