A short sad history of ME/CFS

DanE2010

I am a ME sufferer and can I just say how pleased I am that I found this thread on here! Clouty I have been saying the exact same thing for ages in regards to the lack of goverment funded research into ME and its causes because it suits them financially not to. I was diagnosed with ME just over a year ago after years of going to the doctors begging them to diagnose whats wrong with me. I got glandular fever in 2005 and basically never got better, I was at university at the time and was in my final year so didnt allow anytime for bedrest else I would fail my degree, I paid the price for it greatly though. Mt doctor finally diagnosed me in Jan 2009 and referred me to a ME specialist in March, it turns out the consultant was Proff Pinching who is a leading professor in ME apparently - anyone have any info/opinions on him? Well he was very understanding and nice to me and I cried because was so relieved to talk to someone who understood what I was saying instead of roll there eyes. He prescribed 'pacing' myself which I still havent got the hang of and not much esle and the next appointment is not until this September, so basically since March last year ive had to find my own way, I had a complete meltdown last May and was signed off work until September as I was virtually unable to move and my work had helped me get into that state by making my life a misery and going against my occupational health report stating I was covered by DDA and they had to make reasonable adjustments, they tried as hard as they could to make me leave or sack me but every bit of energy I had left I used to fight back - I am ill and have an illness and im disgusted I could be treated this way for simply being ill, simply because they do not understand the illness because I do not look ill is no excuse to ignore medical advice that was given to them by their own occupational health advisor, my doctor and also my consultant professor wrote a letter to my boss explaining my condition and all was ignored. Anyways I applied for DLA and thankfully I was successful which allowed me to drop my hours to part time and in turn enabled me to keep my job, it was the worst few months of my life but I somehow managed to slowly come out of the black hole and with the part time work I now have time to rest on my days off. A day a work for me means spending the next day in bed but I put up with that because I do not want to become isolated, when I was off sick for months I found out who my friends were and lots of people just gave up contacting me because - you become invisible, people are sick of you talking about being ill, but for ME sufferers this is our life, ME is all consuming and effects every part of your life, you have to have alot of mental willpower to keep going and not give up, its a constant daily battle, getting out of bed, having a shower, getting dressed, all these things healthy people take as a given is not garunteed to us and I truly wish there was better understanding of this. ME is simply not being 'tired' thats why I dont like the term Chronic Fatigue syndrome - there is alot more to it than being sleepy! I have developed food allgergies (for example I can no longer drink milk), I sweat excessively, have lack of concetration, brain fog, body aches, unable to walk for longer than 10 minutes without needing to sit down, swollen gums that the dentist is puzzled at, IBS problems, headaches, poor circulation, the list is endless.
Anyways I digress, I just wanted to say thank you for the information provided here, you mention herbal antibiotics? would you be able to provide me some further information on this? Like most ME patients were becasically left to ourselves to find out what can help us so when someone mentions something we havent tried before we jump on it lol

mardatha

Brilliant post Dan that sounds so similar to the rest of us. I worked nights as a nurse and the last year was sheer hell. My doc said there is some connection with glandular fever, but they dont know what it is, because all ME sufferers have GF antibodies in their blood.
I wish I had a consultant in ME. I'm up the hills with the sheep and they get better care than I do. My gp just sighs and says "self management" I said aye in other word yer on yer own !:D

NEH

mardatha wrote: »

Brilliant post Dan that sounds so similar to the rest of us. I worked nights as a nurse and the last year was sheer hell. My doc said there is some connection with glandular fever, but they dont know what it is, because all ME sufferers have GF antibodies in their blood.
I wish I had a consultant in ME. I'm up the hills with the sheep and they get better care than I do. My gp just sighs and says "self management" I said aye in other word yer on yer own !:D

If you could afford it there is a specialist in Glasgow you could see....

Dan it is such a shame about the research, it happens with a lot illnesses that people forget, MS, Diabetes, Stroke, they don't get much research either.


Unfortunately research does go on but it's always left to individuals to do it and when they do they then have to sell their experience privately....It seems the only way is to get anything done or any help is to beg or borrow the money to see people privately.

mardatha

Too late for me NEH - been off work 6 years and now I'm 60 and we on pension credit. Cant afford to use up any savings cos they cant be replaced. But I have, more or less, learned to live around ME. Just sometimes it makes me cry lol!

Mojisola

mardatha wrote: »

But I have, more or less, learned to live around ME.

I'm another one. While I am much better than I was, I don't think I'll ever recover completely now. I live within the restraints of ME - with the support of a wonderful OH!

My life is now very "small" - I'm sure you'll know what I mean. I'm not very often among fit and healthy people my age but, when I am, I'm staggered by what they can do. What, to me, is a major event that has to be planned for and recovered from, they do without thinking inbetween loads of other activities!

mardatha

Yes, well put. I find myself watching things like how fast people walk ! lol and you feel such a prat when you have to weigh up prons and cons of a day out for AGES wondering if its worth it or can be done.

DanE2010

Thats guys,
If its any conselation the ME specialist as nice as he is hasnt really been of much help in regards to helping me manage my condition because ive only seen him once and that was last March! (apparently the immunology department has a very large waiting list of patients so they are behind hense the long wait for second appointment) Im looking forward to seeing him in a few weeks time for my follow up appointment to discuss things further with him tho as when I first visited him i was young and nieve about ME and didnt realise how much you had to change your life to fir around ME, after my 'meltdown' last year I totally understand that concept now and lead a totally different life to the one I used to!
What I can say about him though is that he was fantastic at giving me hope and very understanding and helped me alot on the work/benefit side of things and went out of his way to write a letter to my boss and also supported my application for DLA with his prognosis on my condition, im very aware of how lucky I am in that respect as lots of ME sufferers dont get any support like that and face the battle alone.
Hopefully a breakthrough will come through soon and all the doubters can be stunned into silence when they see its not in our heads!

olivetree2010

Mojisola wrote: »

I'm another one. While I am much better than I was, I don't think I'll ever recover completely now. I live within the restraints of ME - with the support of a wonderful OH!

My life is now very "small" - I'm sure you'll know what I mean. I'm not very often among fit and healthy people my age but, when I am, I'm staggered by what they can do. What, to me, is a major event that has to be planned for and recovered from, they do without thinking inbetween loads of other activities!

same here, after 8 yrs of ups and downs, no support, occasionally anti depressants to stimulate the sleeping pattern learning to live with ME is a maze!,,having a day of energy would be lovely--what is a normal life?-so i could actually do some jobs i want to do well i cannot remember when i last had one of those, only family to help

Trying to claim DLA/+sickness benefit nightmare..becasue i cannot walk far and live in a bungalow, i was turned down for Dla stating i live in a bungalow!, and have not had a amputation,,, now due to a operation my ME/CFS has worsened so now for 6 month been trying for ESA , been turned down for that--and some of questions wernt even asked!, even had a dr letter to try to get a disabled parking disc, turned down becasue i am not constntlydisabled with my legs...and how many others out there have seen those with parking discs running yes rinning into the shops/,,,,,,,,,,,,,,,,,now got a legal eagle to represent me in my forthcoming appeal for sickness benefit--upon saying that the me association have been helpful also the countess of Mar, so anyone out there in the same boat, you must keep persueing to get some benefits,, as the ones who dont want to work get benefits, or ones who have addictions get benefits, yet those of us who cannot help been ill, who have worked all our lives, are fighting to get what we are entitled to...
Any one with ME will know just what i mean, and we have to help and support each other :j

clouty

it makes me so angry (in a chilled out, focussed kind of way) that there are so many of us abandoned by the health service, having to fight (to the detriment of our limited health) for the support we are entitled to by law.

All because the psych lobby have hijacked this disease for political reasons.

There are good places for help online. Foggy Friends is one of the kindest forums for personal support, medical tips and benefit advice. You have to join before you can see more than the index. The Hummingbirds Foundation is in Canada, has heaps of real advice. Dr Sarah Myhill's website has helped many.

As always, you have to do your research, and act cautiously. There is no doubt that the first step is to make sure to eat well, cutting out all junk food. The second is always listen to your body, stop before you "hit a brick wall" energywise, and get plenty of rest.

Hopefully, things will change soon, with the opening of the Whittemore Peterson Institute's new research and treatment facility, and the publishing of a positive replication of the WPI Science study by the FDA/NIH. But we have been waiting for 25 years or more already - my fingers are permanently crossed.

DanE2010

Thanks Clouty, yeh I have had to change the way I eat dramatically, had to cut out alot of things etc, it is sad that we are left to try and figure this all out on our own, but im thankful for places like this where we can offer each other support and advice. I shall go check those other websites out and have a read, see if there is anything else I havent tried that might help, and like you say, hopefully things will change soon!