Can dieticians (dietitians) help with ME/CFS?

[Midnattsol]

Posts moved from NICE ME/CFS guideline - draft published for consultation - 10th November 2020

I’ve only just realised that in the guidelines it says to refer to a dietitian specialising in ME/CFS if they are losing weight, at risk of malnutrition or have restricted diet. And to send all PwSevere ME to one. This is amazing! So hopefully theres going to be specialist dieticians within each service? I cannot tell you how many times I’ve desperately wanted some help and am scared that I’m losing weight because of ME related reasons… such as now (partly related to ME, partly other things which also have a knock on effect on ME)…but never get help and instead just get underweight.. but can’t go to GP because they won’t understand and I don’t want to end up in hospital where they’ll decide it’s psychiatric, which would be the worst possible place to be. And I really struggle a lot and try to figure things out myself. It’s hard for my family too to see that. This way people with ME esp those with severe ME have a pathway to get help. And I like how that section has set out exactly why we would have problems - altered taste and smell, nausea, swallowing and chewing problems, intolerances. So that GPs and doctors can be in no doubt that it’s not psychiatric causes!

This will help PwME so much. Was reading through the guidelines again a few days ago and was amazed all over again how many good things are in it. I loved re-reading parts are 1.1.8 - 1.1.11, and 1.1.2 and 1.1.3. It is so validating. got some feedback from a doctor that they are very useful and detailed too.

I agree with this I hope dietitians can get to use the knowledge we have about other life-limiting diseases that influence the ability to maintain proper food intake. One of the most used books about diet and disease has a half page about CFS, and while it is not the worst thing I've read it talks about "post exertional fatigue" lasting about two days.. ME/CFS was not mentioned at all when I had clinical nutrition for adults autumn 2020. Should be easier to argue for the disease to be included in the curriculum when it's part of some guidelines.

 

[lunarainbows]

I agree with this I hope dietitians can get to use the knowledge we have about other life-limiting diseases that influence the ability to maintain proper food intake. One of the most used books about diet and disease has a half page about CFS, and while it is not the worst thing I've read it talks about "post exertional fatigue" lasting about two days.. ME/CFS was not mentioned at all when I had clinical nutrition for adults autumn 2020. Should be easier to argue for the disease to be included in the curriculum when it's part of some guidelines.

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.

 

[Midnattsol]

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.

These issues are more or less covered in guidelines for patients with limited digestive capabilities and/or nausea or other symptoms that limit their food intake (including sensory aversion), but it would help to know that these issues are relevant to the care of pwME. Smoothies for example can be recommended because they are easy to digest, but might be difficult with nausea or intolerances (not to forget the sound a blender makes! ). Since we don't learn about ME/CFS there is no "these are common issues for pwME when it comes to nutrition" that every dietitian will at least touch upon in their education. And as you say, it can be very hard to understand.

This is just an anecdote, but when I've asked pwME on facebook if they have talked to a dietitian, most say no. Not that it is easy to be seen by a dietitian in Norway, but it doesn't seem to register to GP's or patients that dietitians could be helpful to help with certain symptoms/problems.

 

[lunarainbows]

This is just an anecdote, but when I've asked pwME on facebook if they have talked to a dietitian, most say no. Not that it is easy to be seen by a dietitian in Norway, but it doesn't seem to register to GP's or patients that dietitians could be helpful to help with certain symptoms/problems.

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.

 

[Midnattsol]

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.

Registered dietitians usually work in a hospital, yes. There are so many other titles people can use if they want to provide nutritional advice, it's maddening! And makes it very hard for patients to know what qualifications the person actually have. In Norway we have "ernæringsfysiolog" (registered dietitian) and "ernæringsterapeut", two very similar words and most people don't know the difference. When it comes to ME/CFS I'm not sure how much it matters as the registered dietitian won't know much either, but they should at least be able to help if the symptoms are explained to them I wish you (and others!) could get adequate help, hopefully the guidelines is a step in the right direction to illuminate the problem

I want to say that undernutrition makes the prognosis and symptoms in other diseases worse, but that just remind me of the argument that exercise makes everything better I do believe malnutrition is an unnecessary strain on the body, though.

 

[Peter T]

This is just an anecdote, but when I've asked pwME on facebook if they have talked to a dietitian, most say no.

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.

 

[Midnattsol]

We have not had direct experience of a dietician , but I don't have much confidence based on relatives experiences.

Dietician input for cancer seemed to demonstrate a complete lack.of understanding re how cancer proliferated and the complete exhaustion chemo induces ( my cousin was single and lived alone) . It was as useful as a chocolate radiator and another cousin who is a biochemist was shocked. Family and friends rallied around to ensure prepared options were available.


Dietician input for Parkinsons where weight loss was an issue recommended increasing sugar intake and failed to give guidance on timing of fortified protein drinks ( have to be timed relative to certain meds so as not to interfere with absorption)

Dietician input for type 2 diabetes seemed to be unaware that Diet provided potential to reverse this .As long as you cut back on the chicken nuggets and chips and did some stuff from scratch that seemed to be enough to tick the box and move on.

There seems to be a lack of awareness of the effects of medications on vitamin and mineral availability and how dietician can be a useful tool to ameliorate this.

I would love to be wrong .

I can say some of those things you mentioned has been improved upon in the education at least (such as the effects of chemo, meal timing with parkinsons, advice for diabetics), but that doesn't mean everyone knows :/ I'm assuming the education is similar between Norway and UK as if you have the education (5 year master degree that includes some clinical work) you can work in either country.

 

[Amw66]

I can say some of those things you mentioned has been improved upon in the education at least (such as the effects of chemo, meal timing with parkinsons, advice for diabetics), but that doesn't mean everyone knows :/ I'm assuming the education is similar between Norway and UK as if you have the education (5 year master degree that includes some clinical work) you can work in either country.

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.

 

[Midnattsol]

This post has been copied from the thread "Multi-omics of host-microbiome interactions in short- and long-term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", and replies moved to this thread.

I'm sure my microbiome would be abnormal. There are so many foods and food families I need to avoid that my food diversity is greatly reduced. For many PWME, reduced activity levels might also affect the microbiome. Studies such as this really should use controls with similarly reduced dietary variability and activity levels.

This! So much this. And include a dietitician when reviewing people's diet.

 

[alex3619]

And include a dietitician when reviewing people's diet.

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.

 

[Midnattsol]

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'm not sure what you mean, to help with reviewing diets of people involved in studies or in general? For what it's worth I know two soon-to-be registered dietitian's (five year master's) with additional bachelor degree's in biomedicine. We do have the training for helping out in metabolomic studies.

 

[alex3619]

I'm not sure what you mean, to help with reviewing diets of people involved in studies or in general? For what it's worth I know two soon-to-be registered dietitian's (five year master's) with additional bachelor degree's in biomedicine. We do have the training for helping out in metabolomic studies.

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.

 

[Midnattsol]

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.

I can't say I recall salicylates being mentioned much during my courses where intolerances were mentioned either.

On the sciene - agree we need to do better.

Fructose, like other carbs, is still not considered "essential" in the samme manner as amino acids and lipids the body can't synthesize. I'd agree this definition of essential is lacking (I have gotten into a few arguments about ALA being the essential omega3 lipid, which makes some people think it is "more important" than EPA or DHA).
The penthose phosphate shunt is still considered very slow, but it is not reliant on fructose consumption to function.

I would love for dietitians to be more involved with eicosannoids and hormones! It is studied a bit in PCOS and dysmenorhea, mostly focusing on the ratio of omega6/omega3, intake of vegetables and other fiber rich foods and a lot of weight-loss diets last time I looked at it. Unfortunately it would be most likely to see a patient to help with weight loss, not about any of the rest, even though diet has a role to play in providing the building blocks of many hormones.

I wrote my master thesis in biology on metabolomics used in a dietary intervention study It is sadly underused but I hope it will be included more as time passes, it would definitely help research in other fields if we were better able to control for dietary factors in omic studies.

 

[alex3619]

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.

 

[Amw66]

I'm not sure what you mean, to help with reviewing diets of people involved in studies or in general? For what it's worth I know two soon-to-be registered dietitian's (five year master's) with additional bachelor degree's in biomedicine. We do have the training for helping out in metabolomic studies.

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.

 

[Midnattsol]

@alex3619 I need to read up on this Agree a diverse diet, glutathione, oxidative stress etc. is important, but I'm sure you know that's not relevant only for pwME.

@Amw66 At least around Europe the education is considered the same, as an authorized dietitian can work in other countries not just the one they were educated in. We have basic cell biology and biochemistry courses, in addition to some microbiology, immunology and pharmacology. And then some of us have additional education on top of that.

I hope you find a solution that works for your daughter.

 

[Hutan]

Linking to this resource:
Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

In November, as part of the UK Malnutrition Awareness Week, Helen Baxter of The 25% ME Group gave a presentation at the Malnutrition Taskforce Learning Event on how dietitians and the wider MDT can help people with ME.