Todays Forum Meeting, 13 July 2022

[Devjon]

Popped in to say how valuable I found today's group meeting. Several new faces and, as ever, some interesting feedback from the group.
I was diagnosed about nine years ago and mostly manage to keep on top of my condition, with the occasional bad patch due to overdoing things.
I found that today's talk by Professor Tim Chevassul from Brighton was both interesting and informative. It's good to keep as informed as possible and the question and answer session was particularly useful.
I picked up some useful information, I've been Vegetarian for nigh on 60 years, in the early days after diagnosis I did try various Vitamin supplements, Floradix liquid and D3K2 supplementation but gradually got out of the habit. Todays discussion has given me some useful information about supplementation from the people in today's meeting. I'll be sure to take a daily 1000mg Vitamin C tablet, and I'll try to make a morning dose of Turmeric part of my daily routine. Beetroot juice also got a positive mention, that is interesting as Beetroot " Shots " are popular with the Ultra endurance community. After todays meeting ended I made myself a sandwich, coincidentally, cheese and Beetroot. My wife wandered in to the kitchen and looked askance when she caught me drinking the juice from the now empty Beetroot jar!

[RUSE7]

Hi Devjon.
What did they say about the Vitamin C and the Turmeric? How does it help? I've got a big supply of turmeric root sitting on my bench and I've been meaning to get around to drinking it in a tea for the last few weeks, but always find a reason not to bother (mostly because it tastes rotten ). If it's good for MDS though, I will definitely give it another go and get it into my regular routine instead of my second cup of coffee in the morning.
Thanks
Ronnie
PS......there is NO way I'm going to be slurping down the content of the beetroot jar....I have no words ......hahah.

[chris]

Hi Ronnie and Kevin

Yes. That was a great and interesting meeting. Dr Chevassut spoke about his interest in Vitamin C and indeed he wrote an interesting article in our paper newsletter a few years ago. Hopefully this is the link:
https://mdspatientsupport.org.uk/vitami ... -properly/

A patient also mentioned that she was diabetic/ pre-diabetic and had started taking daily turmeric in hot water and it had brought down her blood sugar levels. Others then also mentioned that they took turmeric as it is an anti-inflammatory spice.

As ever, very little research done on nutrition and supplements in respect of MDS but I think we all agreed that a healthy balanced diet has got to be of benefit!! Do speak to your doctor before embarking on particular diets or taking any supplements.

Was the juice in the beetroot jar not a bit vinegary , Kevin?! I love beetroot. Grate some raw into some hot stock to cook it and add to a risotto!! Lovely pink colour!!

Best wishes

Chris

[RUSE7]

Thanks for sharing Chris. I hadn't seen it before and it's a really interesting read. Did he mention how the turmeric works or was it along the same lines?
Cheers
Ronnie

[chris]

Hi Ronnie

Dr Chevassut didn’t talk specifically about turmeric (curcumin) but he was aware of a clinical trial at Bart’s by Prof Jamie Cavenagh which investigated it -,following a patient whose myeloma was stabilised after taking it.

https://casereports.bmj.com/content/cas ... 8.full.pdf

And there does seem to be some evidence that it lowers blood sugar.

Chris

[RUSE7]

Thanks for the quick reply Chris. Much appreciated. I'll take a look at that this evening.
Cheers
Ronnie

[Devjon]

It's been a week, and after sticking to my original planned regime I have to report that I've " cracked ". I ordered some Turmeric and black pepper extract from Healthspan because, as the days progressed, it got more and more difficult to down the Turmeric in powder form. I reasoned that if it became a chore then I'd stop doing it, so best to find something more palatable.
The Vitamin C effervescent tablets are a hit, I plonk one in a pint of weakly diluted lemon squash when I get back from my morning run / walk / bike ride and it tastes really refreshing.
One thing I did find amusing as I trawled the various supplement suppliers web sites were how amazingly effective everything they sell is!
They all state that it takes a while for the effect to become noticeable, so I've made a note in the diary and come October I can look forward to start Marathon training again...

[chris]

Hi Kevin

Sophie, our CEO, reminded us at the Oxford meeting today, that when taking any vitamin supplements, herbal medicines, alternative medicines etc, it is always wise to tell your consultant so that any changes, one way or the other, in your blood counts/health can be monitored.

As you noticed, there are always a lot of claims made about effectiveness and how long it takes to work (!), (could that possibly be so that you buy them for at least 6 months or whatever?!), so maybe don’t get your running shoes out just yet!

You’ve done very well MDS-wise for 9 years so maybe your vegetarian diet has helped? You’ve been vegetarian for a very long time, haven’t you? Not sure of your age but you must have started quite young? And 60 years ago it was not at all fashionable? Especially for men? “Real men don’t eat quiche!!” was something my husband had to put up with 40 years ago!! Though not all vegetarians and vegans necessarily eat healthily in my experience. I’ve been a whole food vegetarian for nearly 40 years though we added in sustainably caught fish around 10 years ago as I felt we were ODing on hard cheese which isn’t ideal!! I do wonder if my diet has helped. We have also had our own allotments for 14 years ( for as long as I’ve had CMML!) so we get to eat organically and home-grown food that is very fresh all year round. We’ll never know. Good subject for some research but there’s no money in it?!
Take care.
Chris

[Devjon]

Hi Kevin

Sophie, our CEO, reminded us at the Oxford meeting today, that when taking any vitamin supplements, herbal medicines, alternative medicines etc, it is always wise to tell your consultant so that any changes, one way or the other, in your blood counts/health can be monitored.

As you noticed, there are always a lot of claims made about effectiveness and how long it takes to work (!), (could that possibly be so that you buy them for at least 6 months or whatever?!), so maybe don’t get your running shoes out just yet!

You’ve done very well MDS-wise for 9 years so maybe your vegetarian diet has helped? You’ve been vegetarian for a very long time, haven’t you? Not sure of your age but you must have started quite young? And 60 years ago it was not at all fashionable? Especially for men? “Real men don’t eat quiche!!” was something my husband had to put up with 40 years ago!! Though not all vegetarians and vegans necessarily eat healthily in my experience. I’ve been a whole food vegetarian for nearly 40 years though we added in sustainably caught fish around 10 years ago as I felt we were ODing on hard cheese which isn’t ideal!! I do wonder if my diet has helped. We have also had our own allotments for 14 years ( for as long as I’ve had CMML!) so we get to eat organically and home-grown food that is very fresh all year round. We’ll never know. Good subject for some research but there’s no money in it?!
Take care.
Chris

Hi Chris,
My remarks about the efficacy claims of the various pills and potions was certainly tongue in cheek Another thing I noticed was where the source of these new remedies come from. For example, if I were in the Shellfish business and had literally tons of waste byproduct, wouldn't it be wonderful if the waste happened to be the source of a " miracle " supplement.
I'm sure my diet has contributed to my well being, I was 14 when I became vegetarian, it was a lot more difficult back then, especially as a young man, and I did fall by the wayside from time to time in those early years. I didn't take up running until my late 30's, initially it was an aid to keep me of cigarettes which I'd given up for the umpteenth time, but on 1st February 1981 I threw my packet of " Players Gold Leaf " into the bin and went for my first run. On February 1st 2021, armed with my snazzy GPS enabled watch I went back and ran the original route, it was a little over two miles and I remember having to stop and walk a couple of times on my original run.
It was running that alerted me to the fact that something was going amiss with my body, I quickly went from having a lot of stamina ( I was an " Ultra " runner back before it became a thing ) to struggling to run a few miles. I hadn't had cause to visit the Doctor for several years but prompted by my breathlessness and fatigue I had a chat and had blood tests followed by about 18 months of various investigations due to originally going down a gastro-enterology diversion. My attempts at self diagnosis saw me spending seven months following a Gluten free, Soya free, Vegan diet, not as daunting as it would first appear thanks to our diverse multi cultural society.
I do think that the endurance running has helped me cope both psychologically and physically with my MDS, pushing through extreme fatigue during various events built a physical and mental toughness, and exhaustion was a constant companion. ( Having said that, the fatigue from MDS is a different fatigue, my mind wants to push me onwards, but my legs physically buckle )

I'm envious of the Allotment, a friend of mine had one and would pass on lots of his produce. Our neighbours of many years had an Allotment overlooking the banks of the Stour, sadly now gone to housing, but they recently managed to get a much sought after plot which is just around the corner and has a three year waiting list. Thank's to the location of the Allotments with it's small surrounding ' Pocket Park ", we've had visits to our garden from various species of wildlife over the years, the highlight being a Badger!

Lovely to chat with you

Kind Regards,

Kevin

[RUSE7]

I know what you mean about the turmeric being hard to take. It's not pleasant, and it stains everything! Nightmare. One way I've found that is quite nice is to mix it in with your coffee. Mix
1/2 a teaspoon of cinnamon, 1/4 teaspoon of turmeric powder, 1/4 teaspoon of ginger powder, black pepper and some honey in the bottom of a cup before adding in the coffee. I have mine with a bit of milk and it's a bit like a chai coffee. Very delicious and very addictive!

The other way I do it is to get a few slices of fresh turmeric, a few slices of fresh ginger, a little bit of a cinnamon stick and some black pepper and boil it up in a couple cups of water in a saucepan for 5 mins, then drink it over the morning. Quite nice.

Amazed about your running exploits. I used to love running, but haven't for quite a few years now thanks to a dodgy ankle and this darned MDS. I seem to get tired pretty quickly after physical activity which is so frustrating.I've always been really active. I know a lot of people reckon that exercise makes them feel better, but I just can't get on board with that. It knocks me out! A little gently and often seems to work for me.

OK, off to feed the neighbours cat while they're off on holiday. He'll be getting very angry . Keep well both of you. Rxxxxx