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Chronic Fatigue Syndrome/M.E. Society
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Hi, I've managed to get much better. Here is the blog I wrote that explains how. https://nofatigueblog.wordpress.com/Best of luck,Rob
There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time. with symptoms lasting from 18 months to several years. and in some cases sufferers never reach full recovery and too date there is no known medical 'cure'
Symptoms
Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.
Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. hyper sensitivity: skin contact causes intense sensations of Pain .Skin sensations such as skin crawling and pins and needles may be felt.
Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.
I have Lived 7 years diagnosed and according to national statistics up to 1 in 2000 young people in the uk have been diagnosed or are in the process of diagnoses. but in 7 years I have never Met a single Person My age with the illness.
is there anybody else out there?
for more info Check out AYME
http://www.ayme.org.uk/article.php?sid=10&id=58
Original post by Addnightshade13
Hey!
This thread has become the root thread for the All about M.E society! any one currently suffering with Me. know some one who is, or is just curious to know a little more about M.E and Chronic fatigue. is welcome to join the discussion
meaning suffering or sickness
This thread has become the root thread for the All about M.E society! any one currently suffering with Me. know some one who is, or is just curious to know a little more about M.E and Chronic fatigue. is welcome to join the discussion
meaning suffering or sickness
There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time. with symptoms lasting from 18 months to several years. and in some cases sufferers never reach full recovery and too date there is no known medical 'cure'
Symptoms
Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.
Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. hyper sensitivity: skin contact causes intense sensations of Pain .Skin sensations such as skin crawling and pins and needles may be felt.
Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.
I have Lived 7 years diagnosed and according to national statistics up to 1 in 2000 young people in the uk have been diagnosed or are in the process of diagnoses. but in 7 years I have never Met a single Person My age with the illness.
is there anybody else out there?
for more info Check out AYME
http://www.ayme.org.uk/article.php?sid=10&id=58
Original post by Anonymous
Hi, I've managed to get much better. Here is the blog I wrote that explains how. https://nofatigueblog.wordpress.com/Best of luck,Rob
Hey anon,
Thanks for the read.
Just thought everyone should be aware, researchers split CFS participants into those with and without mental health problems as on a neural level lots of studies suggest the two groups of CFS patients present differently.
It's also worthwhile noting with depression you get:
- extreme fatigue
- secondary POTS from spending so much time in bed which will lead to feeling like collapsing after being upright
- cognitive dysfunction (including ST memory etc) to the point where depression is an exclusion criteria for something called mild cognitive impairment.
- more frequenty 'get sick' then healthy controls
- muscle pain/ aches generally from co-morbid anxiety disorders.
It can be really hard to differentiate the two, a key thing you've picked up is the 'post exertional malaise' ... but yeah fantastic that you've recovered but different people find different things work and like I said on a clinical level there are at least two subtypes of CFS (some people have suggested 5) Also, in young people 90% of people recover within 10 years anyway (wooo!).
After I've finished my degree I'll aim to provide an accessible literature review for anyone who's scientifically inclined/ interested.
Hey,
I was wondering if any of you guys could give me some advice?
Applying to university and on the UCAS form it has a section to give details about medical conditions, and I am not sure what exactly to write about CFS, other than when I was diagnosed. Do they require more information, like how it effects me etc, or can I leave it minimal. I have also mentioned it in my personal statement as I felt I needed to explain why my gap year didn't quite go as planned.
Thanks in advance, and I hope you are all feeling well
I was wondering if any of you guys could give me some advice?
Applying to university and on the UCAS form it has a section to give details about medical conditions, and I am not sure what exactly to write about CFS, other than when I was diagnosed. Do they require more information, like how it effects me etc, or can I leave it minimal. I have also mentioned it in my personal statement as I felt I needed to explain why my gap year didn't quite go as planned.
Thanks in advance, and I hope you are all feeling well
Original post by BoxOfChocolates
Hey,
I was wondering if any of you guys could give me some advice?
Applying to university and on the UCAS form it has a section to give details about medical conditions, and I am not sure what exactly to write about CFS, other than when I was diagnosed. Do they require more information, like how it effects me etc, or can I leave it minimal. I have also mentioned it in my personal statement as I felt I needed to explain why my gap year didn't quite go as planned.
Thanks in advance, and I hope you are all feeling well
I was wondering if any of you guys could give me some advice?
Applying to university and on the UCAS form it has a section to give details about medical conditions, and I am not sure what exactly to write about CFS, other than when I was diagnosed. Do they require more information, like how it effects me etc, or can I leave it minimal. I have also mentioned it in my personal statement as I felt I needed to explain why my gap year didn't quite go as planned.
Thanks in advance, and I hope you are all feeling well
Highlight the day to day affects you have. Online resources can detail uni support for disabled students, if you qualify, like stays within campus and what you would benefit in light of your condition. Only you know what you need and how bad you are. Maybe consider private accommodation in quiet part that's near uni to avoid excess exertion which could hinder a better health quality of life. Good luck. Listen to your body n list symptoms down. Scale how bad could be a way of highlighting what affects you more/less. Perhaps look into local support groups near uni to manage the possible or pending affects of balancing chronic illness and FT HE demands.
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Really struggling at the moment, since I got diagnosed with M.E, my university insisted that I leave my course, till I get better... though my tutor didn't really like me anyway :/ I "officially left the day before my birthday December 2015". I then told student finance I left the day I got home, and originally the woman I spoke to was really nice, telling me not to worry as I would get the 60 days student finance...
2 Weeks after christmas, all hell breaks loose. I ring up student finance again due to getting two letters demanding me to pay back over £300 on one and £400 on the other... This then leads to this new adviser telling me I had commited fraud, and demanding to know where the money had gone (some had been on travel to college as medically cannot drive so have to take the bus, the other went on books for my course, the rest went to my parents for my share of the rent and other living expenses).
I ended up basically breaking down, so my dad rang them and arranged a payment plan, and the adviser suggested I apply for ESA. I had been volunteering up till a few weeks ago at a nursery, the only reason I stopped was due to the nursery being closed down and the managers axing me early.
I had since applied to ESA, had a letter telling me it had been awarded, (as have also IBS, Aspergers, Dyspraxia, Asthma, Anxiety as well as a few other medical issues as well as M.E)... only problem is now I need a fit note! and to cap it all the only appointment that is soon is with the coldest doctor known to man.... feel really concerned :/ As on one hand, my M.E specialist and former uni support worker is telling me to rest, on the other I know I need to get some money coming in!
I am having to give up my dream of childcare at the moment, I had the previous year trying to get a job, had a near mental breakdown in doing so so stressed out....
2 Weeks after christmas, all hell breaks loose. I ring up student finance again due to getting two letters demanding me to pay back over £300 on one and £400 on the other... This then leads to this new adviser telling me I had commited fraud, and demanding to know where the money had gone (some had been on travel to college as medically cannot drive so have to take the bus, the other went on books for my course, the rest went to my parents for my share of the rent and other living expenses).
I ended up basically breaking down, so my dad rang them and arranged a payment plan, and the adviser suggested I apply for ESA. I had been volunteering up till a few weeks ago at a nursery, the only reason I stopped was due to the nursery being closed down and the managers axing me early.
I had since applied to ESA, had a letter telling me it had been awarded, (as have also IBS, Aspergers, Dyspraxia, Asthma, Anxiety as well as a few other medical issues as well as M.E)... only problem is now I need a fit note! and to cap it all the only appointment that is soon is with the coldest doctor known to man.... feel really concerned :/ As on one hand, my M.E specialist and former uni support worker is telling me to rest, on the other I know I need to get some money coming in!
I am having to give up my dream of childcare at the moment, I had the previous year trying to get a job, had a near mental breakdown in doing so so stressed out....(edited 8 years ago)
Spoiler
the key thing is to take a step back here as it won't help your health but also talking to the specialists and getting them to write you a letter to send onto the student finance explaining everything with justification on health grounds and situation might help them ease off.
As it seem you're struggling with your health as is and you don't need their additional stress.
ESA sick notes, if the cold doc doesn't sign you off. Perhaps look at another doc within the clinic or transfer to a new one if possible! Good luck all the same!
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Hi, first time posting on here, I just wanted to know how your universities view and offer support with your CFS/ME? I was diagnosed in 2012 and still suffer and although it is mostly under control I decided to put it on my UCAS application because I have mild relapses about once a month for a few days.
I had an interview on Wednesday for a university and they turned around and said I probably wouldn't be able to manage the course I had applied for (Primary Education) due to my health. They had not previously asked me anything about my condition or how severe it is or anything! I've discounted them now even though they then offered me a place.
Just wanted to know what you've experienced while applying or studying at university, and if you have any tips if something like this happens again? Thank you!
I had an interview on Wednesday for a university and they turned around and said I probably wouldn't be able to manage the course I had applied for (Primary Education) due to my health. They had not previously asked me anything about my condition or how severe it is or anything! I've discounted them now even though they then offered me a place.
Just wanted to know what you've experienced while applying or studying at university, and if you have any tips if something like this happens again? Thank you!
Original post by Jamie
If you dig a bit deeper I'm sure you can cut and paste even worse things for you to white knight troll against.
I know plenty about the cluster of symptoms many of you love to reduce down to a single 'diagnosis' of ME. I've actually worked in jobs dedicated to conditions like CFS/ME. I used to do clinics in it. All of which were probably after the posts you dug up.
I'm now upto over 20 patients for whom I've help guide the final diagnosis away from 'CFS/ME' to something which can and has been treated.
It is utterly foolish to take so many ailments and put a single unifying title on it as if there is any commonality in the actually pathophysiology. Then when people look at treatments they can't figure out why nothing works (answer because you are trying to treat a dozen or more different diseases, not one).
In the future CFS/ME will be gone. There will be half a dozen syndromes/diseases names for all the different ones currently labelled CFS/ME. And people like you will be out of a job and have to move onto some other grey area to try to peddle your wares
I know plenty about the cluster of symptoms many of you love to reduce down to a single 'diagnosis' of ME. I've actually worked in jobs dedicated to conditions like CFS/ME. I used to do clinics in it. All of which were probably after the posts you dug up.
I'm now upto over 20 patients for whom I've help guide the final diagnosis away from 'CFS/ME' to something which can and has been treated.
It is utterly foolish to take so many ailments and put a single unifying title on it as if there is any commonality in the actually pathophysiology. Then when people look at treatments they can't figure out why nothing works (answer because you are trying to treat a dozen or more different diseases, not one).
In the future CFS/ME will be gone. There will be half a dozen syndromes/diseases names for all the different ones currently labelled CFS/ME. And people like you will be out of a job and have to move onto some other grey area to try to peddle your wares
I can't say as I agree with everything Foo says at all, but he at least tries to help people which is more than a lot of professionals do. I'd love to have a diagnosis of something more concrete that's treatable so that I can actually have some sort of a life, for the time being CFS/ME is the best I have though. Hopefully in the future they will be able to split it down but tbh any research that anyone is doing into it is better than none. Foo has helped me and a lot of people here and has it himself- in the absence of any other support then that can make a huge difference.
For the record, I also have gold d of e. I did it when I was nowhere near as ill as I am now, almost ended up in hospital after it and have probably been a lot worse ever since because of it. It's still one of the things I'm most proud of that I've ever done though, it took me so much to get through that and prove myself and everyone else wrong (I was canoeing btw, no way I could have done it walking!) but I did it, noone can take that away from me.
That's just my view anyway, not going to take the argument any further!
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Original post by Foo.mp3
No need, you're already suitably discredited/disgraced
Hardly.
I've been a member of this for 13 years. I'm sure you'll find much worse comments if you dig hard enough and far enough back.
With time comes education, growth and a realisation that not all is as simple as it seems.
I stick to my established view of CFS and ME being a very wide catch-all term designed to have high sens but low spec (even when using the established international consensus criteria). More research will help this
Hey, uh, does Fibromyalgia count?
I have suspected I have Fibro for several months, and I finally went to see the doctor today, and after explaining my symptoms, the first thing she suggested was indeed Fibromyalgia. I'm booked in for blood tests in two weeks time. I'm kind of excited, y'know? I might finally be able to put an official diagnosis on my problems.
But, I have a question. Does anyone with chronic pain here work? How do you earn money? I ask because I don't think I can get through Uni (starting this September) without working over the summer, but I had a shift (I work as a bartender/waitress) at the weekend and it completely wiped me out for two days. Doing it every day over the summer would probably kill me.
I have suspected I have Fibro for several months, and I finally went to see the doctor today, and after explaining my symptoms, the first thing she suggested was indeed Fibromyalgia. I'm booked in for blood tests in two weeks time. I'm kind of excited, y'know? I might finally be able to put an official diagnosis on my problems.
But, I have a question. Does anyone with chronic pain here work? How do you earn money? I ask because I don't think I can get through Uni (starting this September) without working over the summer, but I had a shift (I work as a bartender/waitress) at the weekend and it completely wiped me out for two days. Doing it every day over the summer would probably kill me.
Original post by lyzac
Hey, uh, does Fibromyalgia count?
I have suspected I have Fibro for several months, and I finally went to see the doctor today, and after explaining my symptoms, the first thing she suggested was indeed Fibromyalgia. I'm booked in for blood tests in two weeks time. I'm kind of excited, y'know? I might finally be able to put an official diagnosis on my problems.
But, I have a question. Does anyone with chronic pain here work? How do you earn money?
-
I ask because I don't think I can get through Uni (starting this September) without working over the summer, but I had a shift (I work as a bartender/waitress) at the weekend and it completely wiped me out for two days. Doing it every day over the summer would probably kill me.
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I was also facing this problem but the doctor told me that it is due to low RBC and it can be regained only with juices and to eat kiwis.
These days mostly persons are on medicines and the reason behind this is our diet is not proper and everyone is running after money.
Original post by cammiegrace
These days mostly persons are on medicines and the reason behind this is our diet is not proper and everyone is running after money.
That is FAR from true. I thought I had chronic fatigue but it turned out I just had an autoimmune disease. Strangely enough, that's lucky. You know that if you're lucky to have an autoimmune disease that leaves you tired and perpetually on medicine that the alternative is terrible.
This may have been posted before but I'll bring it out again: http://www.theatlantic.com/health/archive/2015/10/chronic-fatigue-patients-push-for-an-elusive-cure/409534/
For me CFS was a umbrella term to what I've been diagnosed with of late. Just be mindful when being told you have it as it can be just excessive fatigue and passing condition or if it is chronic fatigue then make sure you have the right support in professionals and aftercare to avoid relapse!
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Original post by cammiegrace
I was also facing this problem but the doctor told me that it is due to low RBC and it can be regained only with juices and to eat kiwis.
Oddly enough my red blood counts and stuff has always been slightly above normal, but I have low blood volume at the same time. Odd combo
Original post by WoodyMKC
Oddly enough my red blood counts and stuff has always been slightly above normal, but I have low blood volume at the same time. Odd combo
Well hello Woody..
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Original post by Quiet _One86
Hello you
How're you getting on?Original post by WoodyMKC
Hello you How're you getting on?
How're you getting on?Hey. All getting by. New diagnosis to get my head round but won't go into it on here. Bit of a frustrating turn around. PoTS is kicking my butt of late. Causing a great manner of mishaps. How about you?
Original post by Anonymous
Hey. All getting by. New diagnosis to get my head round but won't go into it on here. Bit of a frustrating turn around. PoTS is kicking my butt of late. Causing a great manner of mishaps. How about you?
Me
oops damn you "Make post anonymously"!!Related discussions
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- east park ground floor
- Severely unhappy in postgraduate education
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- Child Nursing
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- Unknown Chronic Illness
- chronic fatigue
- Always tired when studying
- Info-dump: Mental health and relationship with my mum
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