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Chronic Fatigue Syndrome/M.E. Society

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
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)

The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:

Myalgic: Greek origin meaning muscle :s-smilie:

Encephalo: Greek origin meaning brain :confused:

Pathy: meaning suffering or sickness :eek:

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? :eyeball:

for more info Check out AYME
http://www.ayme.org.uk/article.php?sid=10&id=58

(edited 14 years ago)

Reply 780

choleCcarknif3r

22

Original post

by furryface12

Having the same thought process :redface:

I have less modules this term but almost all my teaching hours are on one day and can't move... Going to take me the rest of the week just to recover from that I think :frown:

but one step at a time. We can do this, and if not then we know we've tried, and it's for the best :hugs:

My timetable was reduced towards the end of last term for marking, but back to full now. Just come down with the cold from hell too, so really hoping I pull through! Going to the doctors as soon as I get back anyway to see if I can get a rheumatology referral. Need to be tested properly for RA because my old haematologist thinks I have it, but there were never any services that could help me at home and I was too nervous to go to the uni doctor with it at first in case they thought I was just trying to get attention or something. That sounds like a really tough day. We got this though :hugs:

I was thinking earlier, we're basically 1/3 through the year and 1/9 through the entire degree so we're doing well!

(edited 8 years ago)

Reply 781

furryface12

21

Original post

by chelseadagg3r

My timetable was reduced towards the end of last term for marking, but back to full now. Just come down with the cold from hell too, so really hoping I pull through! Going to the doctors as soon as I get back anyway to see if I can get a rheumatology referral. Need to be tested properly for RA because my old haematologist thinks I have it, but there were never any services that could help me at home and I was too nervous to go to the uni doctor with it at first in case they thought I was just trying to get attention or something. That sounds like a really tough day. We got this though :hugs:

I was thinking earlier, we're basically 1/3 through the year and 1/9 through the entire degree so we're doing well!

Ah that's a complete pain. Hope the cold isn't too horrendous! Yeah I need to do that too, forgot one of my meds wasn't on repeat like a complete idiot :rolleyes:

Hope they refer you though, much as RA would be a complete pain (literally :tongue:

) at least you and they know what's going on then, and might be able to do something about it. Can relate to that with the doctors on the first day thing, I ended up writing a huge list and taking it in with me just cus hopeless at trying to remember it all to say :redface:

they took it really well though, i've got further in four months than I have in years on all sorts of levels. They are so so much better than my home ones!

We have! and that's true too :eek:

Don't know about you but we only have two semesters a year so after exams the next couple of weeks (oops :erm:

) I'll be halfway through first year! Which is both amazing and scary. Had a huge meltdown/panic over it all last night but feeling a bit better about things today, so will see :redface:

Hope you're okay, and sorry for rambly length, may be slightly hyper :colondollar:

Reply 782

Anonymous #14

Hi guys,

Everyone here seems a lot older than me but i thought i'd post to ask what your experiences are like seeing specialists, I'm going to be referred to Bath (even though its 150 miles from my house).

Ok, a little about myself: I'm 15 and in year 10 and i have been ill since October 2017. I'm not sure what has triggered me to become this ill because i wasn't struggling at school or anything like that and i haven't been ill with anything else that could trigger it. Now, 5 months in i'm quite close to being diagnosed with CFS?M.E. which is a bit more comforting because for the first few months everyone thought i had glandular fever however i never had swollen glands.

With regards to school its really difficult because i'm the "poster girl" for getting A* grades (I'm predicted all 9's at GCSE) but now i barely go twice a week to school (just for the morning). It's really hard when i fail at most of my subjects (I'm lucky to get a D) and people think its really funny that i'm not doing well. I just wanted advice also about how to get through to people that i might never really get back to who i used to be and that i've not made up my illness and skived off school for the past 5 months.

Thank you if you've read this it's nice to read the stories of people who feel the same as me.

Reply 783

choleCcarknif3r

22

Original post

by Anonymous

Hi guys,

Everyone here seems a lot older than me but i thought i'd post to ask what your experiences are like seeing specialists, I'm going to be referred to Bath (even though its 150 miles from my house).

Ok, a little about myself: I'm 15 and in year 10 and i have been ill since October 2017. I'm not sure what has triggered me to become this ill because i wasn't struggling at school or anything like that and i haven't been ill with anything else that could trigger it. Now, 5 months in i'm quite close to being diagnosed with CFS?M.E. which is a bit more comforting because for the first few months everyone thought i had glandular fever however i never had swollen glands.

With regards to school its really difficult because i'm the "poster girl" for getting A* grades (I'm predicted all 9's at GCSE) but now i barely go twice a week to school (just for the morning). It's really hard when i fail at most of my subjects (I'm lucky to get a D) and people think its really funny that i'm not doing well. I just wanted advice also about how to get through to people that i might never really get back to who i used to be and that i've not made up my illness and skived off school for the past 5 months.

Thank you if you've read this it's nice to read the stories of people who feel the same as me.

Hi

I'm 20 now, but I was diagnosed at 13/14 and have had it since I was in primary school. At the time I was just reffered to a paedeatrician who didn't really know how to help me. I was referred to an immunologist once I was 18 who had a special interest in ME, and I didn't find him particularly useful. I actually really didin't like him, but he was just a horrible doctor and it wasn't anything to do with his services. That being said, I am involved in communities online of people who has CFS/ME and have listened to many an experience of ME clinics and physicians across the UK, and some do find it really helpful. I'm not sure if your experience will be any different because you aren't an adult yet, but they're very big on teaching you how to manage your condition and how to pace yourself so that you can get more done with the energy you have and have less crashes.

It's definitely come at a difficult time for you. Would it be possible to drop a GCSE or two? I know it's a tough decision and is obviously something you should talk to your school and someone at home about, but I dropped Chemistry and IT (and they allowed me to not bother with PE in the first place) and it really helped because I had more time to give to my other subjects. In year 10 and 11, my attendance was less than 20% and I didn't go in for 3-4 months at one point right before my exams and what I learned is that it's really important to pace yourself and not push yourself too hard, keep in contact with your teachers and friends so that they can help you and you don't miss too much, and revise when you can. Don't get me wrong, all of my coursework grades were rubbish because I was never there to do the work, but I passed everything based on the exams. Also talk to your school about mitigating circumstances, because this should count as one. It did for me and it allowed me to still get a B or a C (can't remember which) in a subject I was too ill to do the exam for, based off the work I'd done throughout the course.

Socially, especially at your age, it's really difficult. In my case, I lost a lot of friends and everyone thought it was all a big joke and I was labelled a skiver. Everyone, including a lot of my teachers, thought I was going to fail everything. I came out with pretty fair grades though, an A in English too, so I definitely had the last laugh. Don't let it get you down too much or it'll make you feel worse. Talk to others with the condition and learn how to pace yourself, and if you can speak to others your own age with it too. You might find a support group in your area or a group on social media. It's really hard to make people understand, but if you can get them to watch a film on Netflix called Unrest it could help them to understand how it affects people a little more. It's a documentary made by a woman with ME. She had everything going for her, was really successful, and then she was just bedbound and no one understood so she made a documentary about it. I haven't showed them to anyone, but I've made a couple of film pieces about my illness. One is a short documentary with an interview with someone else who has it, and the other is a short animation where it's all symbolic. One day I might show them to people, but they definitely helped me come to terms with it more. Just remember that it's okay to kind of mourn who you used to be, but it's reall important to look to the future to the things you still could do. You could get better for a start, children are more likely to recover than adults, but even if you don't you still have a future ahead of you. I mean, from her bed that woman made a critically acclaimed documentary. She literally directed via facetime and stuff from her bed. You can still do amazing things and it's really important not to forget that

Reply 784

#PACEtrial

5

Original post

by Anonymous

Hi guys,

Everyone here seems a lot older than me but i thought i'd post to ask what your experiences are like seeing specialists, I'm going to be referred to Bath (even though its 150 miles from my house).

I think that clinic may be connected to Esther Crawley. I recently started a thread about problems with her work here:
https://www.thestudentroom.co.uk/showthread.php?t=4913512

Sounds like a really difficult time for you. Most people in your situation do go on to naturally recover (you're young and have not been ill for long), but no-one seems to know why or if there's anything we can do to help. Which is especially hard on the minority who do not just naturally recover! At this point it could be that you're best off just going easy on yourself and hoping that your body will fix itself.

I don't know what it would be best to do in your situation. Is there any way that you can delay taking your exams a year? If you have your ill-health properly registered, then maybe mediocre GCSE results might not matter much so long as you do recover?

Reply 785

Integral_Chicken

11

Hi all

M(ultiple)S(clerosis) sufferer here, and since there doesn't seem to be any type of thread or society dedicated specifically to MS (I'm thinking of making one but MS isn't too common in youngsters) I guess I'll post here as I feel people with ME tend be able to relate quite well to us MS sufferers and vice versa!

A little bit about me:

I am currently 21 (turning 22 in April - oh no!) and retaking my second year of Mathematics and Computer Science at university. I've been through the roughest patch imaginable over the last 16 months and things keep getting worse, unfortunately. :frown:

I was officially diagnosed with MS in the summer of 2017, having had a 4 year battle with completely unexplained and frankly weird symptoms (slurred speech, inexplicable bouts of forgetfulness and a slow brain that I now know to be brain fog, extreme fatigue etc). The diagnosis was a huge relief to me, since at least it gave a label to all the crazy things I was feeling and assured me that I wasn't just going insane (or being the world's laziest human).

I was initially diagnosed with Relapse-Remitting MS (RRMS) but I have a meeting with my neurologist soon and I want to talk to her about why I think I'm Secondary Progressive (SPMS). Relapse Remitting indicates that somehow a patient will experience periods where their problems will increase - knows as the relapses - and periods of remission where their symptoms usually are almost non existent for a while except maybe a few niggling things here and there. I have been hit with wave after wave after wave of increasingly disabling symptoms over a course of 16 months with absolutely zero periods of remission in between, so as you can imagine I am having a right old fun time! (not really, life sucks)

I've always been a high flyer in life, achieving A*s and A at both GCSE and A-level, and completing my first year of university with a mark over 70%. I always like to add here that this isn't a brag or anything, it just helps people realise where I have fallen to. I am now unable to do anything with my mind that requires anything more than a little brain power, and solving complex problems where my problem solving ability is put to the test is a real issue. As you can imagine my degree is fully based on this so, again, I'm having a right fun time! (also not really)

Tiredness is one of the biggest issues that I face a lot of the time. Even getting out of bed is unbelievably difficult, and it doesn't help that when I wake up my vision is blurred/full of blind spots and my limbs don't work for at least an hour at times. I also suffer quite badly from muscle weakness, and so that affects me walking, using cutlery, opening taps and doing normal every day tasks in general.

I could probably turn this post into a series of books, and as much as I want to (maybe I should start a blog) I don't want to bore any of you to death. I mean, you can look up symptoms of MS and I literally have almost every single one of them, bar maybe one or two, ranging from mobility issues and spacticity (intentional spelling error to bypass banned word) to bladder and bowel problems.

Feel free to ask my any questions if you are curious, or send virtual internet hugs and support if you are sympathetic! I just feel quite isolated being a youngster with MS and, not being able to find others like me sucks. Maybe I can fit in here (if I haven't alienated and bored all of you)!

:colondollar:

Reply 786

Quiet _One86

16

Damn it looks like I've overdone it of late. Chronic Fatigue has reared its ugly head again. But looking at the blood test results of late, its probably associated to the low iron results I got and pushing myself a little thin with doing a little(ish) each day. Alas I do have my diagnosis's of other conditions to factor in too. Here's hoping the right doctors are able to help me through this. Anxiety has worn me out of late too. Hope everyone else is doing okay!

Reply 787

#PACEtrial

5

Original post

by Integral_Chicken

Feel free to ask my any questions if you are curious, or send virtual internet hugs and support if you are sympathetic!

Internet hugs a plenty. Really sorry you're having to deal with this and I'm not surprised it's isolating for you.

There's a new facebook group for young people with ME/CFS:

https://www.facebook.com/groups/428132000945067/

I also found this FB group for youg people with MS, but I'm not sure what that's like:
https://www.facebook.com/groups/MSSupportGroupForYoungAdultsunder35/

Reply 788

Phoebeliz

2

Hello everyone, my sister has ME/CFS and I am trying to do a research project at college for my Level 3 course in health and social care. I was wondering whether anyone can complete my survey. It is on the topic of awareness of ME/CFS.

Reply 789

furryface12

21

Original post

by Phoebeliz

Hello everyone, my sister has ME/CFS and I am trying to do a research project at college for my Level 3 course in health and social care. I was wondering whether anyone can complete my survey. It is on the topic of awareness of ME/CFS.

Bit late I know, but where's the survey you want completing? :smile:

@Quiet _One86 good to see you around again! Sorry you've overdone it, glad things seem to be a bit better in general though

Reply 790

Quiet _One86

16

Original post

by furryface12

@Quiet _One86 good to see you around again! Sorry you've overdone it, glad things seem to be a bit better in general though

Hey FF12. Thanks. Good to be back..although feel I've gotten more cynical in my older years :smile:

alas my conditions have limits and I've learnt along how er week to manage them but can't say that to my symptoms today (migraines/nausea and disorientation) and post fall/passing out at the zebra crossing the other day which knocked me for six. I'm blaming this balmy weather we're having in and increased commitments. How are you doing?

Reply 791

phoebe.w

1

Original post

by furryface12

Bit late I know, but where's the survey you want completing? :smile:

Haha I forgot to post the link, it’s stoll appreciated:
https://www.surveymonkey.co.uk/r/XVJV98K

Reply 792

furryface12

21

Original post

by Quiet _One86

Hey FF12. Thanks. Good to be back..although feel I've gotten more cynical in my older years :smile:

alas my conditions have limits and I've learnt along how er week to manage them but can't say that to my symptoms today (migraines/nausea and disorientation) and post fall/passing out at the zebra crossing the other day which knocked me for six. I'm blaming this balmy weather we're having in and increased commitments. How are you doing?

Good! Yeah, cynical is needed a bit on TSR :lol:

limits are a pain, managing them helps a lot though :smile:

sorry the other day was so bad though, passing out has such a big effect for ages :/ for me atleast. Yeah the weather's a bit nuts atm! I'm alright, well beyond knackered somewhere and not at all looking forward to the last few weeks catching up with me but they're done at least :redface:

and first year of uni about done! I never ever thought I'd get this far, so pleased

[QUOTE="phoebe.w;77538450"]

Original post

by furryface12

Bit late I know, but where's the survey you want completing? :smile:

Haha I forgot to post the link, it’s stoll appreciated:
https://www.surveymonkey.co.uk/r/XVJV98K

I've done that before! I'll do it for you later :smile:

Reply 793

choleCcarknif3r

22

Original post

by Phoebeliz

Hello everyone, my sister has ME/CFS and I am trying to do a research project at college for my Level 3 course in health and social care. I was wondering whether anyone can complete my survey. It is on the topic of awareness of ME/CFS.

Done! Full marks. I'm good at being ill! :laugh:

Reply 794

Anonymous #16

Hi all, I don’t know if I’ve posted on this thread before. I have cfs and was diagnosed in October 2013, half way through my HNC. Luckily it was only one day a week and I was able to complete it. I had been doing really well, recovering and hoping to go to uni this September. (Only a few months away, it’s scary!). However, I had a relapse last month, which I’m still affected by. Less energy than I had and any days I overdo I feel it the next day or so... I wondered how everyone coped at uni? I’m doing a part-time undergrad course and was told at the open day, I’d be in uni for 6-9 hrs. I think I can manage my work at home. It’s more possibly not being able to get into uni some days and not being able join in with the social aspect (not like student nights out drinking, never been into that, it’s the clubs and societies at the uni that I’m interested in. And there are quite a few!). I’m a little bit worried about when it comes to possible group work also.

I think I’m rambling. Anyway, here’s a few of my worries at the mo. 🙄😏

Reply 795

Anonymous #16

Original post

by Anonymous

Hi all, I don’t know if I’ve posted on this thread before. I have cfs and was diagnosed in October 2013, half way through my HNC. Luckily it was only one day a week and I was able to complete it. I had been doing really well, recovering and hoping to go to uni this September. (Only a few months away, it’s scary!). However, I had a relapse last month, which I’m still affected by. Less energy than I had and any days I overdo I feel it the next day or so... I wondered how everyone coped at uni? I’m doing a part-time undergrad course and was told at the open day, I’d be in uni for 6-9 hrs. I think I can manage my work at home. It’s more possibly not being able to get into uni some days and not being able join in with the social aspect (not like student nights out drinking, never been into that, it’s the clubs and societies at the uni that I’m interested in. And there are quite a few!). I’m a little bit worried about when it comes to possible group work also.

I think I’m rambling. Anyway, here’s a few of my worries at the mo. 🙄😏

Thanks all. :smile:

Reply 796

furryface12

21

Original post

by nulogicsound

Hey Everyone,

Firstly, it has been so incredibly helpful reading everyone's stories so thank you so much for sharing. The amount of times I've thought 'YEEESSS that's exactly it' reading about how some of you feel. It's so reassuring.

I was wondering if anyone can share any insight with me about how long their diagnosis took? It's been 7 long years but I am heading towards a diagnosis and find it crazy it's taken this long and actually it's been quite draining.

I've been passed from an immunologist to a hematologist to a rheumatologist and now to a neurologist. When I saw the specialist last he was fairly certain it is CFS/ME but he said they can only diagnose through process of elimination. The stage I'm at is I'm waiting for an MRI and EEG to eliminate other stuff then I have more blood tests book prior to my next appointment where I'm guessing I might finally have a diagnosis. Has anyone else been through something similar?

This illness has been relatively hard to articulate to friends, family, colleagues let alone comprehend myself so I'm actually looking forward to having a diagnosis as weird as that might sound.

Thanks in advance everyone.
Hopefully I can become a helpful member of this community by sharing my stories too.

:smile:

You've been through a lot of people! But that's good, it means they really are trying to see if there's anything else there for you that might be treatable. CFS/ME is a bit of a 'wastepaper bin' diagnosis in that it's we really can't find anything else so we'll plonk this name on it until we do. They are starting to learn a bit more about it though. For me my diagnosis came relatively quickly as I had a virus that just didn't really go away- as soon as the six months had passed I was diagnosed with post viral fatigue and then CFS, they're basically the same thing. That was just my GP though, I've never actually had any other input for it or more thorough investigations bar from cardiology for something else. For me the single most helpful thing has to be people online! With both CFS and other chronic illnesses in groups on facebook etc. It's just so nice to be able to talk to people that understand and know you aren't alone. So if nothing else, hopefully the diagnosis will bring you that, and as you say give you something to explain it by to others :smile:

Reply 797

SmgCozy

7

Thank you for sharing and i learn a lot.

Reply 798

xfirekittyx

14

Has anyone else had COVID and had it completely set them back?

I am as sick as I was when I first had 'post-viral fatigue' after glandular fever/ if not worse.

I was slowly recovering but when pubs/resturants opened up again my immune system didn't understand. Since July I've been on four courses of antibiotics and had one hospital admission.

Before COVID I managed to do a 20 min walk on holiday (something I had dreamed about doing for years). Now most days it feels too far to walk from my flat to my car and I can only sit up for a few hours out of bed a day.

Ironically, this was the year I finally felt well enough to go back to uni and do a master's and now I have these amazing course offers and don't know what to do. Double irony, it's stage one training to be a health psychologist (one of the main things health psych's do is help people adapt to their diagnosis/ living with pain and fatigue).

Reply 799

Anonymous #17

Hey,

So ive just been diagnosed with CFS/ME. I have to say, I'm gutted. Ive been told i have to go to some group session in two weeks where theyre going to do a presentation and i'll be there with 5 other patients. I hate group sessions and have anxiety so really stressed about this. Did anyone here have to do this first? Also, the dr who diagnosed me today said treatment includes therapy which i knew because i had looked into it online already but im already getting therapy and i know you cant do two at the same time so is this going to be a problem? Really gutted about this and dont really see how therapy is even going to solve physical problems. Can anyone advise what their experience has been like?

Chronic Fatigue Syndrome/M.E. Society

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