WHAT IS M.E?
M.E is usually brought on with a virus (which it was for me) and when the virus disappears the body remains in an ill state effecting about 7 systems in your body:
(nervous System, neurological system, Immune System, Endocrine system, Cardiovascular system, Gastrointenstinal system, Musculoskeletal system).
M.E is an illness that the medical profession know very little about and invest very little amounts of money in, which in truth is shocking as people are often bed bound and house bound and often struggle to work.
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| Lynn Gilderdale an M.E sufferer |
The Chief Medical Officer’s Report on the subject of CFS/ME, issued in January 2002, recognised that
For me personally I went from a fully functioning P.E teacher, sportsperson and individual who lived every day to the full to a very debilitated state literally over night! A very scary experience!
Iv been off work for a year and have spent a large majority of this year lying on either the couch or in bed trying to manage a constant feeling of having the flu and with literally 5% energy of what I had previously and a real inability to function.
Iv had to seriously change my life to try and manage this illness!
EVIDENCE OF LACK OF FUNDING:
To put that into perspective when the middle section of a pier in Eastbourne (England) was burnt down a few years ago: the government stepped in immediately with a £2 million grant.
So, the research needs of over a quarter of a million people with an untreatable and severe illness are seen as less worthy than the middle part of a Victorian pier??!!
FACT :
Not only does it devistate individuals lifes it also costs the UK government over £102 million a year in lost earnings, im not a mathemitician but surely its worth while for the government to invest a signigicant amount of money into research and hopefully find a cure?!!
FACT:
The UK government spent 9.2 million in ONE YEAR ALONE(2011) on HIV/AIDs research but M.E only gets 1.2 million over 25 years!
LIFE WITH M.E
Its taken a year to put in to words what its like and still not sure if Im very good at it but one explanation I give in terms of the impact it has on someones life would be imagine writing down the 10 things you enjoy doing most and the 10 things that define you and then someone takes them away from you overnight. What are you left with??
I am a VERY positive person but this illness tests you to the max. I remain positive that I will improve as If I didn't I would resent life.
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(2) This is the link to the justgiving page:
“CFS/ME should be classed alongside other illnesses such as Multiple Sclerosis and Motor Neurone disease as it is a chronic condition with long term effects on health"
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| Me 2 years ago |
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| How I have spent majority of last 12 months |
For me personally I went from a fully functioning P.E teacher, sportsperson and individual who lived every day to the full to a very debilitated state literally over night! A very scary experience!
Iv been off work for a year and have spent a large majority of this year lying on either the couch or in bed trying to manage a constant feeling of having the flu and with literally 5% energy of what I had previously and a real inability to function.
Iv had to seriously change my life to try and manage this illness!
EVIDENCE OF LACK OF FUNDING:
FACT: From 1990 to 2012 the UK medical research council spent absolutely nothing on biomedical studies into M.E.
So over 22 years not even a penny has been spent on finding out what causes M.E and how to cure it!
In 2012 they spent £1.2 million on 5 small studies but in 2013 and 2014 again no funds were invested.
So over 22 years not even a penny has been spent on finding out what causes M.E and how to cure it!
In 2012 they spent £1.2 million on 5 small studies but in 2013 and 2014 again no funds were invested.
To put that into perspective when the middle section of a pier in Eastbourne (England) was burnt down a few years ago: the government stepped in immediately with a £2 million grant. So, the research needs of over a quarter of a million people with an untreatable and severe illness are seen as less worthy than the middle part of a Victorian pier??!!
FACT :
Not only does it devistate individuals lifes it also costs the UK government over £102 million a year in lost earnings, im not a mathemitician but surely its worth while for the government to invest a signigicant amount of money into research and hopefully find a cure?!!
FACT:
The UK government spent 9.2 million in ONE YEAR ALONE(2011) on HIV/AIDs research but M.E only gets 1.2 million over 25 years!
M.E wrecks peoples lifes, careers, relationships and life goals and although yes some people recover or make levels of improvement there are a huge percentage who don’t ever recover at all and just have to significantly adapt their lives to the illness. People go from having successful careers and lifes to all of a sudden needing home carers, benefits, becoming bed/house bound and often along this journey they loose houses, loved ones etc.
Since becoming unwell I have met a number of people who come in to this category and I feel embarrassed to think how naïve I was to such illnesses prior to becoming ill myself. They want more than anything to escape their current existence but don't have the wellness to do so.
I understand this is the case with a lot of disabilties and illnesses but the lack of time and money put in to M.E research and care by the government in relation to the havoc it causes is inexcusable.
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| (Lee who is co-founder of Change for ME in Australia suffers with ME. He is house-bound!) |
Since becoming unwell I have met a number of people who come in to this category and I feel embarrassed to think how naïve I was to such illnesses prior to becoming ill myself. They want more than anything to escape their current existence but don't have the wellness to do so.
I understand this is the case with a lot of disabilties and illnesses but the lack of time and money put in to M.E research and care by the government in relation to the havoc it causes is inexcusable.
OLD PERCEPTIONS STILL HANGING ABOUT
As there is not currently a test for M.E. (which you can blame on lack of funding into research) years ago it was dismissed by some of the medical profession and the public. as because you‘looked OK’ you must be OK and just need to give yourself a shake! That’s like saying because you can’t see someone’s tumour then they dont have one! ( Last month however there has been a slight breakthrough in that USA now think they finally have a test for it.)
Whether there is a test or not I have experienced the debilitation it brings on your life first hand. Why would someone who loves life and lived it to the full, all of a sudden get up one morning and decide to spend over a year lying about ill, not doing the job they love and not doing any exercise.
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| Photo 1: taken over year ago when i was well |
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| Photo 2: taken few weeks ago unwell |
This takes me on to the reason for the two photographs.(its not because I like a photo of myself!ha ha) it’s to prove and explain something....
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| Photo 3 |
Photo 1 was taken over a year ago when I was well and Photo 2 was taken few weeks ago. I look pretty much the same, (some may argue a little better as I have lost weight due to changes in my diet!ha ha) but my life and quality of life is by far at the negative end of the spectrum to where it was before.
Photo 3 to the left is slightly different as that is me attempting Lunch back in December feeling and looking terrible! Again its to prove a point as I feel no better now in May in photo 2 than I did in photo 3!
Photo 1 was taken over a year ago when I was well and Photo 2 was taken few weeks ago. I look pretty much the same, (some may argue a little better as I have lost weight due to changes in my diet!ha ha) but my life and quality of life is by far at the negative end of the spectrum to where it was before.
Photo 3 to the left is slightly different as that is me attempting Lunch back in December feeling and looking terrible! Again its to prove a point as I feel no better now in May in photo 2 than I did in photo 3!
A few people have said in a way it is good that someone like me has got it. Although virtually impossible to see the positives in the suffering I'v experienced these last 12 months I understand what they mean and I suppose if I can raise awareness and help raise some money towards a cure then some good has come of it.
I even had a fellow PE teacher who Is one of the nicest guys you can meet be completely honest and say “I actually didn’t believe in M.E before John, but now someone like you has been struck by it I certainly do.”
Undoubtedly because there is no objective test for it there will be a few people who have been diagnosed with it from their doctor while it may be something else but that I would imagine is a tiny number!
FACT:
They estimate there are over 300,000 sufferers in the UK but in a recent survey 82% of GPs in Dumfries and Galloway, Fife and Highland surveyed said they had not undertaken any training on M.E./CFS.. THAT IS BAD!!!!
They estimate there are over 300,000 sufferers in the UK but in a recent survey 82% of GPs in Dumfries and Galloway, Fife and Highland surveyed said they had not undertaken any training on M.E./CFS.. THAT IS BAD!!!!
| This intravenous drip helps Theda Myint battle the migraines which are part of her daily battle as an M.E sufferer |
NHS
Im glad in a way iv been able to validate the illness but Im shocked that there is no cure or even guidance from the NHS how to cope with it?!! .
Now to my second bug bare. Surely if a previously very active and driven teacher, semi professional footballer who hasnt had a day off work or education in 16 years gets hit with this serious debilitating condition then the NHS/government would be there to save the day, the answer to that is NO! Dont get me wrong I have the upmost respect for the NHS and im not talking about nurses/doctors etc but someone high up needs to sort the care/provision and funding thats given to the illness! I could accept they don't have the answers if they were actively trying to find them but they aren't!
Its a very lonely place the first 5 or 6 months trying to find out how to regain your health as the NHS abandon you. No specialist, no guidance, no protocol, no team of experts.
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| 5 NHS personnel for one knee op. |
If you tear the ligaments in your knee or have serious synis problems you see a specialist so why when you get hit with a life changing illness do you not get any help?
- FACT: only two out of the 14 Health Boards in Scotland confirmed that they had specialist secondary services for M.E./CFS.
Im lucky in that iv had a supportive doctor who has been a great listening ear but there hands are tied and they don't know what to do. Ironically the only thing that I feel has helped me slightly I cannot access on the NHS!
LIFE WITH M.E
When you say M.E or C.F.S (chronic fatigue syndrome) as its called in some countries a lot of peoples respsonse is “oh the one where your tired all the time”
Thats a better answer than I would have been able to give a year and half ago but its not a good answer.
Thats a better answer than I would have been able to give a year and half ago but its not a good answer.
The name M.E doesnt explain anything but the best way I can personally describe it is “a wave that comes over your body which literally.....
1. takes all your energy from you,
2. stops you from functioning
3. gives you horrible flu feelings/headaches/swollen head feeling
4.Swollen glands/sore throat appear from no where
5.Takes away your ability to hold a converasation / look at light
5. More than likely puts you In your bed either that day or the following day or days!.
…...........and this could happen by 11am after doing something as low level as walking to the paper shop and speaking to the shop assistant for 5 minutes!
A quick example of too much for me was I went to play pool with my mates and within 30 minutes I was too ill to function and had to go home. You could deal with that once or twice a year but thats unfortunately the battle I face daily. Meeting my mates that day was the only goal I had planned. In a strange way you could say that on the M.E scale im fortunate, there are people who wouldnt even be able to make it out of their houses in the first place!
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One of the sweeping statements I get is "you must be missing football and sport/exercise". Yes an incredible amount but this illness takes a hell of a lot more from you than that and thats the least of my worries.
| Me before I got unwell celebrating a goal in the North Derby (Brora V Wick) |
As soon as you do anything
Physical, (for example walking)
Social( for example coffee with a friend) or
Cognitive (writing this blog) ..........your body drains very quickly and all the flu feelings, headaches, swollen heads etc come on and the inability to function returns. This can hit you immediately or it could be the following day!
I joke and say if all I was to do in a day was to lie on the couch, close my eyes and read the odd book for 30 minutes and maybe have a coffee with a friend I would not feel ill (as your living within your levels)
but what kind of life is that. Not one im willing to live for the next 40 years!!
but what kind of life is that. Not one im willing to live for the next 40 years!!
A REALISATION OF THE IMPACT
Its taken a year to put in to words what its like and still not sure if Im very good at it but one explanation I give in terms of the impact it has on someones life would be imagine writing down the 10 things you enjoy doing most and the 10 things that define you and then someone takes them away from you overnight. What are you left with??
Another way I sometimes explain it is you have 5% energy of a normal person for the day and you choose how you use it. As soon as youve used it though the day is over and if you try just a percent more you will be hit with the wave of illness I was talking about above!
Can you imagine how infuriating lying about the rest of the day feeling crap would be. Thinking of all the things you would love to do and need to do but cant! It might be managable for a week or so. That has been peoples lifes with M.E month after month, year after year! Not a nice existence .
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| 2.45 in the afternoon!! |
For somebody who was as active as me its like being in Jail looking out through a window and unable to access your life.
TRYING TO STILL ENJOY LIFE/STAYING POSITIVE
It has taken nearly a year and a lot of mental training of my brain but despite everything I still try and enjoy life...
You may see people with M.E out for dinner having a laugh with family or friends trying to engage in normal activites. I can fully understand this may make you think ‘well what is wrong with them?’
What you probably don’t realise:
- They most likely rested the majority of that day to be able to be there
- They are very likely still feeling ill
- They are very likely putting a brave face on for those closest to them as its undoubtedly hard for people closest to you to see the suffering you experience on a daily basis.
- They know that the impact will hit them later that day or the following day.
WRAPPING THINGS UP
In a way it has taken a bit of courage(and a lot of my energy) for me to come out and write this blog and let people in to my personal life but I have never been one to sit back and take below par or mediocrity so am not going to change this now!
I am dealing with what life has thrown at me as best however, the neglect the government is showing to me and another 300, 000 ill and debilitated people in the UK still really upsets me.
I know and those close to me know that I am doing everything in my power to try and improve (and have also spent thousands of pounds doing so) but would say I am lucky if I have made a 2% physical improvement in a year. (From 10% to 12% and maybe that's just the positive side of me coming out!)
At that rate it would take me 42 years to get better. Its 2015 and it is now time this illness had more awareness and more funding.
At that rate it would take me 42 years to get better. Its 2015 and it is now time this illness had more awareness and more funding.
If this blog plays even a small part in in preventing others from suffering from this illness for years and years (like lots currently do) then I am glad I wrote it.
Seeing as the government aren't funding anything at present! A great UK based charity called InvestinME is trying to raise money to run a treatment trial of a drug they think may help M.E. I would really appreciate if you could spare a few pound and get others too also.
The two different ways to donate are below:
(1)
The two different ways to donate are below:
(1)
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e.g. text the following to 70070
RTUX66 £5
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(2) This is the link to the justgiving page:
Thank you to everyone who has supported me in this very testing last 12 months
and good health to you all!
Feel free to share.
John
