This map is for sufferers to plot their location to help us build a picture of the global ME/CFS and Fibromyalgia community and see whether there are any "hotspots".
If you have been diagnosed with CFS/ ME please add yourself to this map by completing the form below. The map is updated daily.
Please also email a link to anyone else you know who suffers from Chronic Fatigue Syndrome or Fibromyalgia symptoms.
Click here for map.
Friday, 25 June 2010
Sunday, 6 June 2010
How can I help someone with one of these Invisible Diseases?
Raise awareness! These illnesses are incredibly underfunded for research and treatment. However, in order for us to get proper funding, we need people to know about the crisis that these Invisible Diseases cause. So, call your doctors, write your congress, send out mass emails, contact the media. Be an SOS and call for help! And don't be shy about it. Do your research and help to educate everyone you know about Chronic Fatigue Syndrome (M.E.), Fibromyalgia and Lyme Disease; as well as dysautonomias such as POTS.
Secondly, believe them! Validate their suffering and be an advocate for them. Help them to research proper treatment options and start talking to your communities about how debilitating it is to have an invisible disease.
Many invisible disease sufferers experience cruelty from medical professionals and loved ones who do not believe that a person can be suffering with so many ailments at once; with no supporting blood tests to 'prove' anything. The truth however, is that people who suffer with CFS/ME, Fibro and Lyme are heroically strong and brave. Before Multiple Sclerosis (MS) was discovered, it was called the 'hysteria disease' because nobody believed that the disease was actually happening inside these people's bodies, being that there were no specific blood tests to determine it. We now know that MS is a very serious disease. CFS and Fibromyalgia are very similar, and just do not have a common blood test yet. And Lyme disease does not have reliable results for the testing that is actually offered. Half of the suffering for so many people with any invisible disease is from the lack of support and understanding from those around them.
Just because you cannot see another person’s suffering does not mean that it does not exist. It is incorrect and even cruel to say that any of these Invisible Diseases are psychosomatic or hypochondria manifestations, or "all in the head". These are serious physical ailments that cause a reaction of depression and anxiety. There is very little treatment that works for everyone. All people who live with invisible diseases are to be respected and even admired for their pioneering endurance and strength.
One last thing that you can do to help someone who suffers from an invisible disease is to go out of your way to brighten their day. Make them laugh, write them a letter filled with your love for them, surprise them with a loving gift. Just make sure that they know how important they are in your life. ...So, validate their suffering first! Then, help them to find some happiness through all of their suffering.
Secondly, believe them! Validate their suffering and be an advocate for them. Help them to research proper treatment options and start talking to your communities about how debilitating it is to have an invisible disease.
Many invisible disease sufferers experience cruelty from medical professionals and loved ones who do not believe that a person can be suffering with so many ailments at once; with no supporting blood tests to 'prove' anything. The truth however, is that people who suffer with CFS/ME, Fibro and Lyme are heroically strong and brave. Before Multiple Sclerosis (MS) was discovered, it was called the 'hysteria disease' because nobody believed that the disease was actually happening inside these people's bodies, being that there were no specific blood tests to determine it. We now know that MS is a very serious disease. CFS and Fibromyalgia are very similar, and just do not have a common blood test yet. And Lyme disease does not have reliable results for the testing that is actually offered. Half of the suffering for so many people with any invisible disease is from the lack of support and understanding from those around them.
Just because you cannot see another person’s suffering does not mean that it does not exist. It is incorrect and even cruel to say that any of these Invisible Diseases are psychosomatic or hypochondria manifestations, or "all in the head". These are serious physical ailments that cause a reaction of depression and anxiety. There is very little treatment that works for everyone. All people who live with invisible diseases are to be respected and even admired for their pioneering endurance and strength.
One last thing that you can do to help someone who suffers from an invisible disease is to go out of your way to brighten their day. Make them laugh, write them a letter filled with your love for them, surprise them with a loving gift. Just make sure that they know how important they are in your life. ...So, validate their suffering first! Then, help them to find some happiness through all of their suffering.
Wednesday, 14 April 2010
Update....
Hello all,
Not updated for a while, been busy with the LDN Research Trust podcast, lot's to do to raise awareness of Low Dose Naltrexone, have a listen if you haven't yet, so far we have people who are taking it that have M.S, Cancer and Fibromyalgia and how it's working for them.
We are getting somewhere to build on that awareness, one day it will be as available as asprin, and will help so many people.
We are trying to get some celebs on board to help too, if you can help, please get in touch.
Sally is doing great on the LDN, so much better, it's nothing short of miraculous!
Talk soon,
jd x
Not updated for a while, been busy with the LDN Research Trust podcast, lot's to do to raise awareness of Low Dose Naltrexone, have a listen if you haven't yet, so far we have people who are taking it that have M.S, Cancer and Fibromyalgia and how it's working for them.
We are getting somewhere to build on that awareness, one day it will be as available as asprin, and will help so many people.
We are trying to get some celebs on board to help too, if you can help, please get in touch.
Sally is doing great on the LDN, so much better, it's nothing short of miraculous!
Talk soon,
jd x
Friday, 2 April 2010
Monday, 29 March 2010
Vitamin B12 - So well worth looking into x
Are you feeling tired, worn out, and don’t have much energy? Then there is a possibility you may have a vitamin B12 deficiency.
What Does It Do?
One of the primary vitamin B12 benefits is its crucial role in energy metabolism. It is a vital component in the creation of red blood cells. It’s been unofficially coined the “energy vitamin.” Doctors frequently administer injections of it to athletes as well as those who are not getting enough naturally. Although it won’t directly cause weight loss, because B12 is known to increase your energy and metabolism, many claim it may assist with the process. In turn, clinics for losing weight are known to frequently administer shots of it.
Who Needs It?
Normally the body stores an ample reserve of B12 in the liver, however babies and young children sometimes develop deficiencies because their bodies haven’t had time to stockpile the vitamin yet (but check with a pediatrician before giving any health supplements to a child). Senior citizens and those that have had certain types of digestive tract surgery are at above-average risk, too. Also those whom do not consume meat and dairy almost certainly need to buy supplements, because this substance is not found in plant-based foods.
Even if you do get enough through your diet, there is a possibility your body isn’t metabolizing it correctly. This is a common reason many people need to supplement. In fact, 10 to 30% of older adults are known to suffer from atrophic gastritis which decreases the absorption.
Supplement Options
For those that aren’t getting enough, there are many options available. Because there are potential digestive barriers which decrease absorption, Vitamin B12 injections are popular because they help bypass that, unfortunately those require doctor visits. You can also buy vitamin B12 in high doses to maximize absorption. Also, many prefer the new vitamin B12 patch which reportedly allows it to be absorbed directly.
Disclaimer: Obviously this is, and everything else on my blog, should be discussed with your doctor before you begin. I am in no way a healthcare professional whatsoever, so all of the content on here is just meant as a resource which you can use to prompt discussion with a physician.
What Does It Do?
One of the primary vitamin B12 benefits is its crucial role in energy metabolism. It is a vital component in the creation of red blood cells. It’s been unofficially coined the “energy vitamin.” Doctors frequently administer injections of it to athletes as well as those who are not getting enough naturally. Although it won’t directly cause weight loss, because B12 is known to increase your energy and metabolism, many claim it may assist with the process. In turn, clinics for losing weight are known to frequently administer shots of it.
Who Needs It?
Normally the body stores an ample reserve of B12 in the liver, however babies and young children sometimes develop deficiencies because their bodies haven’t had time to stockpile the vitamin yet (but check with a pediatrician before giving any health supplements to a child). Senior citizens and those that have had certain types of digestive tract surgery are at above-average risk, too. Also those whom do not consume meat and dairy almost certainly need to buy supplements, because this substance is not found in plant-based foods.
Even if you do get enough through your diet, there is a possibility your body isn’t metabolizing it correctly. This is a common reason many people need to supplement. In fact, 10 to 30% of older adults are known to suffer from atrophic gastritis which decreases the absorption.
Supplement Options
For those that aren’t getting enough, there are many options available. Because there are potential digestive barriers which decrease absorption, Vitamin B12 injections are popular because they help bypass that, unfortunately those require doctor visits. You can also buy vitamin B12 in high doses to maximize absorption. Also, many prefer the new vitamin B12 patch which reportedly allows it to be absorbed directly.
Disclaimer: Obviously this is, and everything else on my blog, should be discussed with your doctor before you begin. I am in no way a healthcare professional whatsoever, so all of the content on here is just meant as a resource which you can use to prompt discussion with a physician.
Sunday, 28 March 2010
Vitamin D vs Vitamin D3 - Very Interesting
If you have been advised a series of vitamins and are wondering about their effects, here are a few facts you need to know about vitamin D. It is one of the more complex vitamins that are needed by the human body in order to grow and develop. Vitamin D is actually available in two forms, cholecalciferol and Ergocalciferol, better known as vitamin D3 and vitamin D2.
First things first. Vitamin D can be found in 2 forms. Vitamin D2 is manufactured by plants or fungus. You would include it through fortified foods such as juices, milk or cereals. However, vitamin D3 is formed when the body synthesizes sunlight on its surface. It mainly occurs through the exposure of the skin to UVA and UVB rays. Vitamin D3 can also be obtained by consuming animal products.
It is also interesting to note that since it is produced in the body, vitamin D is actually considered a hormone and not really a vitamin! Vitamin D is very important as it regulates the production of phosphorous and calcium in the body.
The Vitamin D that you purchased so willingly over the counter in the form of medication can actually be very harmful without supervision. You see, one of the forms of vitamin D, i.e. vitamin D2 is broken down by the body into different substances. Some of these substances can be very harmful for the body. Vitamin D3 is broken down by the body into a substance called calcitrol, which actually has very important cancer fighting properties.
The supplements for vitamin D may be made from either plants or animals. However, if you were looking for a vitamin D3 supplement, you would look for only those available through animal supplements. It is also available from lamb’s wool!
Vitamin D is frequently added to a number of foods, to make them beneficial. However, if you were looking for vitamin D3 in particular, you would have to go for a pill or a liquid form. It is not very common to find it in cereals or juices.
Another important difference is that vitamin D2 has a shorter shelf life compared to vitamin D3. This decreases the potency of the vitamin if it is used as a vitamin supplement. Some researchers however feel that their efficacy is the same.
Summary:
1. Vitamin D is manufactured by both plants and animals. Vitamin D3 is particularly found on the skin of animals, as a byproduct of synthesis.
2. Vitamin D is not beneficial in all its forms. Vitamin D2, one of the forms of vitamin D can be toxic to the body. Vitamin D3 is good for the body.
3. You can get vitamin D from fortified foods or as pills. However, vitamin D3 is only available in the form of pills or in liquids. They are rarely found in foods.
4. Supplements for the two vitamins are sourced differently.
5. The D2 form of the vitamin has a shorter shelf life compared to the D3 form.
Read more: Difference Between Vitamin D and Vitamin D3 | Difference Between http://www.differencebetween.net/science/difference-between-vitamin-d-and-vitamin-d3/#ixzz0jVvFOlqU
First things first. Vitamin D can be found in 2 forms. Vitamin D2 is manufactured by plants or fungus. You would include it through fortified foods such as juices, milk or cereals. However, vitamin D3 is formed when the body synthesizes sunlight on its surface. It mainly occurs through the exposure of the skin to UVA and UVB rays. Vitamin D3 can also be obtained by consuming animal products.
It is also interesting to note that since it is produced in the body, vitamin D is actually considered a hormone and not really a vitamin! Vitamin D is very important as it regulates the production of phosphorous and calcium in the body.
The Vitamin D that you purchased so willingly over the counter in the form of medication can actually be very harmful without supervision. You see, one of the forms of vitamin D, i.e. vitamin D2 is broken down by the body into different substances. Some of these substances can be very harmful for the body. Vitamin D3 is broken down by the body into a substance called calcitrol, which actually has very important cancer fighting properties.
The supplements for vitamin D may be made from either plants or animals. However, if you were looking for a vitamin D3 supplement, you would look for only those available through animal supplements. It is also available from lamb’s wool!
Vitamin D is frequently added to a number of foods, to make them beneficial. However, if you were looking for vitamin D3 in particular, you would have to go for a pill or a liquid form. It is not very common to find it in cereals or juices.
Another important difference is that vitamin D2 has a shorter shelf life compared to vitamin D3. This decreases the potency of the vitamin if it is used as a vitamin supplement. Some researchers however feel that their efficacy is the same.
Summary:
1. Vitamin D is manufactured by both plants and animals. Vitamin D3 is particularly found on the skin of animals, as a byproduct of synthesis.
2. Vitamin D is not beneficial in all its forms. Vitamin D2, one of the forms of vitamin D can be toxic to the body. Vitamin D3 is good for the body.
3. You can get vitamin D from fortified foods or as pills. However, vitamin D3 is only available in the form of pills or in liquids. They are rarely found in foods.
4. Supplements for the two vitamins are sourced differently.
5. The D2 form of the vitamin has a shorter shelf life compared to the D3 form.
Read more: Difference Between Vitamin D and Vitamin D3 | Difference Between http://www.differencebetween.net/science/difference-between-vitamin-d-and-vitamin-d3/#ixzz0jVvFOlqU
Tuesday, 23 March 2010
Hola, and update
Hola,
Yes it's Spanish, i'm learning it, always wanted to speak another language, so why not, and Sally speaks good spanish so she can help me.
Talking of the devil, she is doing great, the LDN is working wonders, I have about 70% of her back, so real good news.
I'm now on Tumblr, find me at www.johndarinbrame.tumblr.com, yes it's another blog/social network thing, but ties into facebook and twitter, so halves the net time, and I have it on blackberry, so brucie bonus!!
That's it for tonight, night all
jdb x
Saturday, 13 March 2010
Relaxed, yup you bet!!
Hello all,
Another very relaxing day, since we have to fly tomorrow, it was only natural that Sally would do very little, and that's what she's done, she had a fall in the bathroom this morning so that clearly told us, she has to do nothing all day.
We've has some very nice, just me and her time today too with a few laughs along the way, much needed.
We have eaten well today too, gorg mozzarella salad for lunch and pasta for tea, very nice, we are all packed up and ready for a journey tomorrow.
Time for espresso me thinks!
jd x
Another poem i've written, me imagining how it must be to be Sally.
Heal my Torture
Stop the pain, stop the suffering, heal my torture,
Let me talk, let me walk with no boundries,
I want to run like the wind, I want to jump, skip and hop, go wild with nothing to stop me.
But in my small cocoon it is impossible, restricted like a beautiful butterfly who hasn’t yet released or an un-hatched egg , yet to crack and smell the world.
The universe is outside, but for now you must hide.
Everything it has to offer, the beauty and the splendour is off limits, maybe not forever, but still, it is until we stop the pain, stop the suffering, heal my torture.
Written by John Darin-Brame, 13th March 2010, Piediluco, Italy
Friday, 12 March 2010
Another end to an Italian day!
Hello all,
It's been another very relaxing day in Piediluco, as you'd expect, we've rested lots, and went into the village earlier for a few supplies, and had a lovely pasta meal tonight cooked by Maya, and pancakes for desert!!
We've also been helping Maya and Luca paint the tree house we built the other night, it looks great.
Tomorrow we may venture out, maybe Rome, maybe the sulphur baths, we'll see how we feel in the morning, no rush to do anything, doing nothing is great and Sally feels a lot brighter, the rest as done her the world of good.
We both feel very refreshed.
John x
A poem for Sally.....
My Butterfly
My butterfly you are beautiful,
As free as the breeze and as natural as the trees,
Your love is like a flower and your touch it empowers.
To look at you is wonderful, to be with you is colourful.
I am one when I am with you, I am lost when I am without you.
In the darkness I can still see you, when it’s light I know it’s true.
Wherever you go I will always be there, move heaven and earth just to share.
You are everything to me and will always be, you are the one I cannot deny,
You are forever my butterfly.
Thursday, 11 March 2010
A Night in Labro
Hello all,
Firstly another rainy day in Italy, but still very pleasant, and no less relaxing.
Tonight we went out to Labro, a small village which is enclosed within a wall and is completely cobbled, very quaint, beautiful in fact and again, a photographers dream. We went to a small restaurant and had the most amazing time, the food was typical Italian, antipasti, pasta, meat course, desert and of course wine, which I might add was as smooth as silk, a red sicilian, gorg!
The restaurant was very small, seats no more than a dozen, only three of us inside, oh and a large roaring open fire, simply the best! A great evening and topped off by being shown the wine and cheese cellar, cheese's which were four years old and the oldest wine dated back to 1895, and a bottle from 1945, which despite being the last year of the second world war, was a good wine year for this particular french region.
Sally had a great time, she has rested all day to save her "spoons" and used her energy to get out tonight.
All warm inside,
night
jd x
Wednesday, 10 March 2010
Piediluco, another day Italiano style
Hi All,
Having nice long days here, which stretches out the time, had a good wholesome amount of barbequed(on the open fire)meat tonight and gorg italian bread, and washed down with some red wine, very enjoyable, and the sausages here are the very best, the taste is second to none. In fact we've had three sqaure meals today, cooked egg, salami and tomato breakfast, pasta around 5ish then cooked meats and bread tonight, yum yum!
Sal is doing ok today, not huge amounts of pain, and last night she went up to 2ml of LDN, it is having a noticable positive effect on her, which is so nice to see.
Worth mentioning again is that sal is off the opiates, and doing so well, after 15 years of surviving on them, she is now opiate free, so proud of her.
anyhow, that's it for now, more tomorrow, and lot's of pictures to develop tomorrow too, it's a photographers heaven here!!
night night
jd x
Having nice long days here, which stretches out the time, had a good wholesome amount of barbequed(on the open fire)meat tonight and gorg italian bread, and washed down with some red wine, very enjoyable, and the sausages here are the very best, the taste is second to none. In fact we've had three sqaure meals today, cooked egg, salami and tomato breakfast, pasta around 5ish then cooked meats and bread tonight, yum yum!
Sal is doing ok today, not huge amounts of pain, and last night she went up to 2ml of LDN, it is having a noticable positive effect on her, which is so nice to see.
Worth mentioning again is that sal is off the opiates, and doing so well, after 15 years of surviving on them, she is now opiate free, so proud of her.
anyhow, that's it for now, more tomorrow, and lot's of pictures to develop tomorrow too, it's a photographers heaven here!!
night night
jd x
Sunday, 7 March 2010
Piedeluco, a start to some Italian rest!
Hi,
We arrived in Rome yesterday after an excellent 2 and a bit hour flight. I have to say the ryannair staff were really helpful and fully empathetic to Sally in a wheelchair.
We were over on baggage weight, and yes we had to re-jig a few items, but they still let it go, a bit overweight, stating that it was down to essential medical supplies. We didn't have to wait at any queues, we were aloud to sit and relax, with our seats ready for us on the plane, at the front, we were escorted to the lane, helped on and then off again, and again, didn't have to wait in any queues, just got lead to the front, i have to say the whole experience was very good, and the most chilled flying experience i've ever had, if felt a bit like being a celeb, so very funny!!
We got here last night, after a bit of shouting, due to the blackberry, orange maps, not quite saying what Sally thought, but got here, in the dark, and when i say dark, there is zero light at night, we're a few hundred feet up, so much so that this morning, the clouds on the hills, were lower than us!!
This morning, the sun is shining, the skies are blue, and it is idyllic, the most beautiful place i've ever seen, as for relaxing, wow, i've never been so chilled, so i'm sure it will help Sally no end, there's very little to get mad about here, apart from non-charging laptops!!
More to come
john x
We arrived in Rome yesterday after an excellent 2 and a bit hour flight. I have to say the ryannair staff were really helpful and fully empathetic to Sally in a wheelchair.
We were over on baggage weight, and yes we had to re-jig a few items, but they still let it go, a bit overweight, stating that it was down to essential medical supplies. We didn't have to wait at any queues, we were aloud to sit and relax, with our seats ready for us on the plane, at the front, we were escorted to the lane, helped on and then off again, and again, didn't have to wait in any queues, just got lead to the front, i have to say the whole experience was very good, and the most chilled flying experience i've ever had, if felt a bit like being a celeb, so very funny!!
We got here last night, after a bit of shouting, due to the blackberry, orange maps, not quite saying what Sally thought, but got here, in the dark, and when i say dark, there is zero light at night, we're a few hundred feet up, so much so that this morning, the clouds on the hills, were lower than us!!
This morning, the sun is shining, the skies are blue, and it is idyllic, the most beautiful place i've ever seen, as for relaxing, wow, i've never been so chilled, so i'm sure it will help Sally no end, there's very little to get mad about here, apart from non-charging laptops!!
More to come
john x
Saturday, 6 March 2010
Can't sleep, Italy tomorrow!!
Bit of a late night blog, 3.40am, been chatting to a friend in LA, now getting some final bits together for our Italian break, why sleep when you have 8 days in beautiful Italian surroundings to look forward to, will update from Italy.
night all
xx
night all
xx
Thursday, 4 March 2010
Wednesday, 3 March 2010
Camera, Lights , Action!!
NO, we have not got Steven Speilburg staying at the moment, but we are making an info video for youtube and blogs, if you live within a 100 mile radius, you should hear the screams between now and about 3am!!!
Progress reports to come......
Cheers,
Jd ( hollywood director)
Wonder whether we'll get an oscar????
Progress reports to come......
Cheers,
Jd ( hollywood director)
Wonder whether we'll get an oscar????
Update on Sally - LDN day 4
Hello all,
just a quick update on Sally, as she's now on day 4 of low dose naltrexone (LDN)
She's doing great, bit more energy, more positive and looking better, lots of people have said how cleaner, fresher she's looking.(maybe the bath helped!! LOL)
All good so far, she ain't running any marathons but it is certainly having a good effect.
More to come, and Rome on Saturday, eeeks, must pack!!!
john x
just a quick update on Sally, as she's now on day 4 of low dose naltrexone (LDN)
She's doing great, bit more energy, more positive and looking better, lots of people have said how cleaner, fresher she's looking.(maybe the bath helped!! LOL)
All good so far, she ain't running any marathons but it is certainly having a good effect.
More to come, and Rome on Saturday, eeeks, must pack!!!
john x
Sunday, 28 February 2010
Butterfly has 9 hours solid sleep, never known it!
Hello,
It's the day after the night before, Sally took her first dose of LDN last night, she slept from 12.30 last night through to 9.30 this morning, solid, that means no waking, stirring. I have been together with Sally for just over two years (yes it seems longer), and in that time i've never known her do that, it's incredible.
Just thought i'd share, if it's the LDN, and think it may be, well wonderful.
jd x
It's the day after the night before, Sally took her first dose of LDN last night, she slept from 12.30 last night through to 9.30 this morning, solid, that means no waking, stirring. I have been together with Sally for just over two years (yes it seems longer), and in that time i've never known her do that, it's incredible.
Just thought i'd share, if it's the LDN, and think it may be, well wonderful.
jd x
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