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Diet

Postby Marianne123 on Thu Aug 01, 2013 10:41 pm

There are published books which make suggestions about diet for both fibromyalgia and ME but they do not refer to extensive medical evidence from research papers although in some cases there have been occasional publications. What if anything should patients do diet wise if they are well enough to eat normal food? What particular food choices may be beneficial eg decaffeinated products and are any supplements frequently recommended by a variety of authors really helpful? Please refer to published papers in your answer so we can determine appropriate evidence bases for any response.
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Re: Diet

Postby Sue Luscombe on Wed Aug 14, 2013 9:05 am

Hello Marianne123

You have touched on some very important points- that there is a fair bit of written information about eating for ME and fibromyalgia which makes various health claims. Anyone can call themselves a nutrition expert and write about ME.

What should I do diet wise?
Eating well and having an adequate intake of all the essential nutrients including vitamins, minerals, and trace elements is very important for our health, whether or not we have ME or fibromyalgia. A good starting point as to how we can achieve this is the Eatwell Plate- here is the link for NHS Choices on eating well - http://www.nhs.uk/Livewell/Goodfood/Pages/eatwell-plate.aspx. This demonstrates how a “healthy diet” can be achieved by having a balance from each of the different food groups.

In recent years there has been a very comprehensive review of all research on diet interventions for CFS/ME by the NHS Centre for Review and Dissemination, University of York (A Bagnall et al). We know that many do change their diet and/ or take diet supplements (over 60% in an ME survey 2008) and report that this is helpful. However, from the research reviewed the conclusion was that “There is not enough evidence about whether the use of diet interventions and supplements is helpful for CFS/ME for healthcare professionals to recommend them.”

For those who are using supplements it is advised not to exceed the safe levels recommended. What are the safe upper limits and the background to these conclusions was published in full in this document - http://cot.food.gov.uk/pdfs/vitmin2003.pdf- by an independent expert panel. They looked at thousands of pieces of evidence regarding harmful effects associated with 31 vitamins and minerals, including a thorough examination of international research. It is 360 pages long. A simple interpretation and what is recommended by the NICE guidelines on CFS/ME is, if you wish to take a supplement, do stick to no more than 100% of recommended daily intake (RDI) of each nutrient. A good way to do this is to take a multivitamin and mineral supplement with a good range of nutrients giving 100% of the RDI. This is generally safer than taking individual supplements.

For a brief overview of diet for CFS/ME the British Dietetic Food Facts - http://www.bda.uk.com/foodfacts/CFS-MEandDiet.pdf- explain common issues. Intolerances are commonly reported especially to caffeine and alcohol. In these instances avoiding high caffeine drinks like coffee, cola, tea, chocolate can be helpful. Avoiding caffeine in drinks after 6pm with sleep problems is also a good idea, but otherwise if you tolerate caffeine OK there is no need to avoid.

References
1. http://cot.food.gov.uk/pdfs/vitmin2003.pdf
2. Bagnall AM, Whiting P, Richardson R, Sowden AJ. Interventions for the treatment and
management of chronic fatigue syndrome/myalgic encephalomyelitis. Qual Saf Health
Care 2002; 11(3):284-288.
3. http://www.bda.uk.com/foodfacts/CFS-MEandDiet.pdf
Sue Luscombe
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Re: Diet

Postby thehermit on Wed Aug 14, 2013 11:04 am

You replied regarding CFS/ME diet and supplements. I'm curious if it is the same for FM. I have always been told to take magnesium and that studies have reflected this.
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Re: Diet

Postby goblinff on Wed Aug 14, 2013 11:12 am

Thanks for that Sue, I didn't know about the CFS/ME diet BDA thing you posted. I will have a look.
It's really reassuring to see you're putting so much effort into answering the question with proper backup to research etc.
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Re: Diet

Postby Jessica Bavinton on Wed Aug 14, 2013 12:09 pm

Thanks, Mariane123 for asking for published research for informing our answers!

As you know, when looking into these concepts (and all treatments and theories), it’s important to understand the quality of the research published, the background of the study, and the scientific methodology behind it. Once you start delving deeper, we often find that 'evidence' and 'research' is not of sufficient rigour to draw any conclusions at all. Such conclusions can be inaccurate, and potentially harmful. Unfortunately, they can be presented so well and so credibly that it can be hard to tell 'good research' and 'bad research' apart, so it's a good job we have people like Sue who can tease these things out for us.

For example: We shouldn’t trust research telling us the cure lies in eating lots of tomatoes if it’s sponsored by the tomato producers, had only 5 people participating, 3 drop-outs and wasn’t accepted by a credible publication. Before tomato producers get upset with me, that was just an example!!
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Re: Diet

Postby Laurellen on Wed Aug 14, 2013 4:47 pm

Jessica Bavinton wrote:Once you start delving deeper, we often find that 'evidence' and 'research' is not of sufficient rigour to draw any conclusions at all. Such conclusions can be inaccurate, and potentially harmful. Unfortunately, they can be presented so well and so credibly that it can be hard to tell 'good research' and 'bad research' apart


This is very true. It is sad that there seems to be such a tolerance for people making money from misleading claims about CFS and their ability to treat it. Hopefully they will soon have to face some sort of accountability.
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Re: Diet

Postby Sue Luscombe on Thu Aug 15, 2013 9:38 am

thehermit wrote:You replied regarding CFS/ME diet and supplements. I'm curious if it is the same for FM. I have always been told to take magnesium and that studies have reflected this.


Hello,

The evidence on benefits of taking magnesium supplements is not as concrete as some would suggest. It may help but there is not the evidence to recommend this.

This written by Fibroaction is very sound and balanced about taking of magnesium for fibromyalgia and includes its references:
http://www.fibroaction.org/Documents/Fa ... rapies.pdf
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Re: Diet

Postby formads16 on Thu Aug 15, 2013 10:20 am

Hi
My daughter is just 16. In a nutshell, she has had depression that has now seemingly developed into CFS. All we've had is a diagnosis of CFS but no help or advice yet. She feels ill all the time - fatigue, digestive problems, brain fog, etc. She has constant headaches and is waiting treatment for nerve damage in her neck. She also has IBS and long-term low ferratin. Her health is sadly preventing her from enjoying a full life, although she tries her best.

Last year I took my daughter to a nutritionist and she had a time of taking several supplements - magnesium, creatine, vitamin D, bacteria-inducing tablets for the stomach. We still try to follow a stone age diet as much as possible and my daughter avoids gluten as this and cow's milk upset her. A gastroenterologist said there was no evidence of leaky gut syndrome (but he did diagnose the IBS).

I worry that the CFS diagnosis will men that everything is put down to that and that there may be an underlying problem such as leaky gut or anemia (very heavy periods). (NHS iron supplements have been prescribed but upset her stomach so I buy supplies from a health shop).

Everything seems to take such a long time, from one appointment to another, following one lead and then trying something else. I feel I should be bolstering her diet but cannot decide what is best. I will continue with iron - can you please recommend a good brand at the right dosage?

I am also worried about her blood sugar dips. She markedly dips and improves with a snack, has cravings for coffee which seem to ease the headaches a little. Could this be significant?

Sorry it is confusing!
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Re: Diet

Postby Marianne123 on Thu Aug 15, 2013 11:18 am

Thank you for this Sue. As I suspected there is an absence of evidence for any of the claims made. Are there reasons which make studies into diet specific recommendations outside the normal diet health guidance impossible or is it a case that funding needs to be obtained for studies into diet to be conducted? If the latter, can recommendations be made to Stephen Holgate's group?
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Re: Diet

Postby Sue Luscombe on Thu Aug 15, 2013 11:44 am

Marianne123 wrote:Thank you for this Sue. As I suspected there is an absence of evidence for any of the claims made. Are there reasons which make studies into diet specific recommendations outside the normal diet health guidance impossible or is it a case that funding needs to be obtained for studies into diet to be conducted? If the latter, can recommendations be made to Stephen Holgate's group?


Good quality research on diet is lacking and would be really helpful. Is this not why so many popular theories and advise have evolved to fill this gap of evidence-based recommendations? Good question about whether this could be done through the newly formed CFS/ME Research Collaborative (CMRC) under the chair of Stephen Holgate. So long as the research proposal is of a good quality, well thought out, clear objectives, and detailed etc the the answer must be 'yes'.

It really concerns me professionally that there are so many following very restricted diets with CFS which may be causing them more hardship than benefit.
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