Can dieticians (dietitians) help with ME/CFS?

Yeah. I hope though that before the dieticians finalise their advice / programmes, that they get the input of those with ME and speak to professionals who have done home visits for those with severe ME (ie CureME team) first. One difference between the rest of the population and PwME is that our difficulties with food also are in issues with taste / smell / textures, general sensory intolerance, difficulty digesting, as well as what is typically known as food intolerances. For example when I am very sick, I only eat very soft foods and even then usually cold yoghurt or only very milky foods. But during that time, if someone were to tell me I must eat a full meal with vegetables every day, veg smoothies to get nutrients in etc (as I was told at one clinic), go on the candida diet - I would become extremely unwell and would not be able to. It happened to me a lot of times.

It’s the neurological / sensory aversion to those foods and that it’s difficult to chew and have those tastes in my mouth when chewing and swallowing too. I feel extreme nausea, and I also seem unable to digest foods that are usually thought of as healthy. Forcing it can make someone profoundly unwell. Eating solid foods when I can only manage liquid can also make me very unwell. I think Whitney spoke about a similar issue - he was eating yoghurt for a long time, but people talked about dairy intolerance and then he tried some meat - the very next day he became very ill as his stomach just couldn’t digest it. I think it’s very important not to force PwME to eat what others may be able to tolerate and instead trying to find ways to get foods or vitamins in another way (eg fortified drinks or feeds as the guidelines say, could be a better way), especially people with severe ME - the intolerances, issues with digestion and sensory reasons for not eating food can be very hard to understand as they’re not visible physically but it’s really important.

 

I think I’ve only been to a dietician once, (if they are the people in Hospital settings?), before I became ill. But since I became ill, no one has mentioned seeing a dietician. I’ve only seen nutritionists via Skype / phone (I decided to see them as other patients said it would be good). They’ve all been a disaster - all made me worse, and didn’t understand ME. I also saw a “registered clinical nutritional therapist”, at a medical clinic, who also didn’t understand ME and again made my stomach issues much worse, as well as not helping the ME either. It really affected me.

It would be really good to be able to have someone involved in helping with my food intake and nutrition, who doesn’t give dodgy (or even very “alternative”) food advice, I really hope this can be implemented properly from the NICE guidelines into the clinics.

 

Here in the UK my GP did refer me to an NHS community based dietician, who saw me at my doctor’s surgery. This was only after I had myself identified my gluten intolerance. We had just one session with general advice on achieving a gluten free diet.

However I would argue that everyone with ME should be given information on potential diet related issues and an idea about when it would be appropriate to ask for specialist input, including access to dieticians. Hopefully the new NICE guidelines will result in more proactive input relating to diet related issues, and not somewhat random responses after the fact.

 

These are all in past 4 years.

The Parkinsons was this year. The sugar aspect surprised as ketogenic has some evidence of reducing symptoms as did an almost complete reliance on dairy for nutritional density . There are some suggestions that dairy is not necessarily a good thing for Parkinson's

I have a friend who had health issues for years which were eventually helped by a nutritionist. Her life has been turned around to the extent that she took redundancy and has retrained as a nutritional therapist herself and treats primarily through diet rather than supplements ( unless needed) . Her knowledge on cofactors, processes etc is impressive and she is very switched on re drug interactions.
Her experience previously of dieticians when dealing with relatives was similar to mine. Here at least there seems to be a large knowledge gap. Hopefully this is a local rather than general issue.

 

Every dietician I have ever met, and that is a few, has not had the training to help here. We need a new specialist doctor type, and we don't have it.

 

I have some level of salicylate intolerance. I may have it under control. I tried having a discussion about this multiple times with nutritionists and dieticians (including hospital based) and got zero knowledge from them, zero assistance, zero understanding. This is about clinical dietician advice, I will discuss research in a bit as my views are different.

Central core areas in nutritional science are well understood for the most part, with some caveats. Some core issues need oodles of more research. Some are clearly misleading or wrong. Once you get outside core areas it gets much worse very fast.

For example, its very clear that theoretically, not tested on a large patient group so far as I know, fructose drives insulin resistance and hence diabetes. Yet fructose is a low GI sugar and is touted as good. Though glucose will produce a larger glucose spike, and hence more immediate damage, fructose makes it all worse in long term. So does insulin. In type 2 diabetes I think we are at the point where clinical studies should not often be on management but on full cure. Its happening but does not get much press, just some small studies. If those studies are wrong or misleading we need to know that too.

Yet total avoidance of fructose is a bad idea. For some reason its not considered an essential carb. I think it is. Its absolutely required in the diet unless you are consuming some other pentose sugars. However the quantity is small, and I think this is why it might not be considered essential. Our innate pentose sugar synthesis was, according to the science when I was studying biochemistry, very slow. Please keep in mind that my training is out of date, for all I know it might now be considered essential, please let me know if anyone knows about this.

I think dieticians will have the training in time, when nutrional science advances. My big issue is this is still probably the second most unreliable area of medicine, after psychiatry. The problem is not the practitioners themselves, its the science they rely on. This then feeds into what is taught in universities and other places.

Now this is mainly about clinical diet involvement. In research I would agree that dieticians should be involved for several reasons: diet of enrolled patients should be reviewed, dieticians can get involved in the research and both learn from it and contribute to it, and diet should be one of those factors which is at least looked at in controlling bias in studies. As this advances the underlying science will improve. I do approve of practitioners engaging in research even if only in supporting roles. Research level skill sets are hugely valuable even in private practice.

My background includes nutritional biochemistry, and I still find it disturbing that in Australia, where a key medical commentary (study summary not the full study because the significance was overlooked) on salicylates was published in 1984, dieticians here still do not know the basics. Much of what is touted by doctors on the subject I consider misleading or wrong. Learning to find out for yourselves is about the best skill you can learn in any area in medicine, including evidence based practice (rather than EBM).

Etited to add: I suspect the core issue with nutritional science is similar to what happens in neuroscience. We are only just starting to figure out how the brain works, and its the most complex system science has ever studied. So psychiatry is mostly founded on dubious theory. Nutritional science is much better in parts, but we still do not understand how all the pieces fit together. When I was investigating eicosanoids (the most important hormones) it was a horrible mess, with new studies coming out all over the place and a lack of central unifying theory. It might still be, I have not even tried to keep up to date. So we don't understand a major hormone network, we are still learning about metabolomics (its not yet a mature field I think) and so on. I could go on and on but I should limit what I say. Nutrional medicine and science is an evolving field, and it will advance over time, but its not nearly there yet. So involvement and advancement in the science is critical, but current theories must be under constant review.

 

Its good this has moved to a new thread, I can open up the discussion on salicylate intolerance a bit more. It seems to be moderately common in ME patients, and I will get to what I think is one of the big reasons in a bit.

The key targets for salicylates are the delta-5 and delta-6 desaturase, which are critical enzymes for eicosanoid synthesis. Every cell in the body communicates via eicosanoids one way or another. However this is just one aspect of the problem. Those process omega-3, -6 and -9 fats, though I am less sure about omega-9. Those elengated omega-3 and -6 fats can be converted to eicosanoids.

A diverse and appropriate microbiome may be able to detox salicylates. So dietary diversity is a key factor.

The liver can detox salicylates but requires glutathione.

The main substance listed as regulating the desturases is glutathione.

I suspect that its much more complicated, and may involve enzyme variants due to cleavage and folding issues, requiring glutathione, and not just due to genetic issues.

So anyone with oxidative stress, and inadequate amino balance, and insufficient polyunsaturated fats, is at risk of having salicylate issues.

ME is an oxidative stress disorder and glutathione status can be poor.


Now to my experiences. You cannot balance omega-3 and -6 to get this right in my opinion. Its not sufficient. That does not mean it wont be useful when we figure it all out. I tried this for years in the 90s. Borage oil and evening primrose oil and edible linseed oil all led to unstable improvement for me.

Salicylate avoidance can be a major disaster, another long story. However salicylates are not all equal, and regular small doses of high salicylate foods (often spices) can assist building tolerance. Large spikes in salicylate intake is however a deleterous issue.

You can get some benefit from boosting glutathione, which is an entire dietary strategy area on its own and has problems.

More recently I found intermittent fasting improves things a lot. I can speculate about mechanisms, but this is really only an observation. However its very flexible, can work with almost any diet, and can be started slowly allowing blood sugar regulation issues from fasting to be minimized for many people.

One food that is often maligned in popular food theories is butter. Its a source of a long chain omega-6 - arachidonic acid. I get some benefit from daily small doses of butter. I also eat seaweed, though more for the iodine.

I also get benefit from Brazil nuts in small amounts. This is due to the omega-6 fat but also selenium in my opinion. I particularly find it useful to treat insomnia on occasion, but not every occasion. This is because initiation of sleep relies on eicosanoids.

If you are overweight and have salicylate intolerance you cannot easily do a ketogenic diet, though you can if you eat a lot of butter and cream and full cream milk, plus organ meats. This is because most keto fat sources are high salicylate sources.

I think anyone interested in nutrition and ME needs to be aware of these issues.

These are all factors that could be investigated in nutriotion and salicylate sensitivity studies.

Mods, please feel free to move this commentaary to one of the salicylate sensitivity threads.

 

Perhaps in your country. I'm not sure how many have a biochemical or biomedical background here ...

We have recently had input from a dietician as my daughter has issues swallowing certain textures. It was useful in that it confirmed we are doing all we can and a low GI diet was recommended.

We got some fortifying samples to try ( Fresubin fat based shots- unfortunately the texture of wallpaper paste and very artificial tasting - I have managed to hide small amounts in shakes, but being a level 2 texture its a struggle) . Most of the other products were high carb, so not a lot of options other than to continue with the protein shakes we sourced ourselves.

Gut microbiome has been off since the start of illness. It changes but remains off.