Nutrition/Supplements - Please read before posting

This is a folder for MDS patients and carers wishing to share their own personal experience regarding nutrition and the use of different supplements to help with general health.
MDS UK does NOT endorse or recommend any products that may be mentioned here.
MDS UK strongly advises to ALWAYS consult your clinical team before taking ANY supplements.

Moderator: Steering Committee

Forum rules
No promotional materials, no obvious advertising of any products.
Contributors must limit their messages to their own experience and not recommend any supplements to other readers.
MDS UK advises to follow a healthy diet as per our Nutrition Factsheet - and does NOT endorse nor recommend any particular supplements mentioned in the messages below.
MDS patients MUST seek advice from their haematology clinical team before using any supplements.
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Joined: 20 Nov 2008 14:05

Nutrition/Supplements - Please read before posting

Post by sophie » 07 Jan 2016 12:42

Dear Forum readers and members - please use this folder to contribute your own personal experience about keeping a healthy diet and nutrition - as well as supplements you may have found helpful for your general health.

When leaving messages, please add as many details as possible regarding your own situation, your type of MDS, any other health issues, other medication you may be on etc.
Every patient is totally individual and what works for one person may not be suitable for another.
Please also take great care to remember that any supplements may help with general health only.

:!: No supplements have yet been shown to have an influence on the MDS disease itself.

:idea: But by improving your general health with good nutrition, some gentle exercise and possibly some supplements or vitamins, you can help your body and mind cope better with some of the symptoms of the disease.

:arrow: You can find our Nutrition Factsheet on our website - under What is MDS?/Information Material/Life Style Advice. ... -material/

Please ALWAYS talk to your clinical team before embarking on ANY change of diet, special nutrition or use of supplements.
These changes or supplements may have an effect on your blood counts and your haematologist needs to be aware in order to assess the situation and any positive or negative changes taking place.

And please remember that everyone's situation is individual. Try to be as concise and factual as possible when leaving messages.
This includes dates when starting/stopping, dosages, strength of product, origin, source of information etc.
Include also other medical treatments you may be on - as symptoms or improvements could be due to medication.

:idea: Also use a diary and scales to monitor any symptoms over time.
For example:
1= No fatigue at all
2= Mild Fatigue - able to do normal activities
3= Some Fatigue - able to do most activities
4= Moderate Fatigue - able to do most activities, but need rest
5= Severe Fatigue - difficulty walking or doing home activities such as cooking or shopping
6= Extreme Fatigue - needing to sleep or rest all day

Use similar scales to monitor any other symptoms such as pain, headaches, appetite, depression etc.

We suggest you name messages according to the diet or supplements used - so that people can contribute if they have tried similar things.

We hope you all find this folder helpful.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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