Author Topic: M.E. ....What it means  (Read 26169 times)

Offline libertee

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Re: M.E. ....What it means
« Reply #50 on: October 22, 2009, 02:23:32 PM »
Hi there,

i hadnt seen it, have had a good read though and i think it is a breakthrough. I know some people thing ME/CFS is one of those 'made-up' conditions invented by lazy people who just want an excuse not to work or so anything with their lives but it isnt.  It is extremely frustrating and debilitating.  One of the most frustrating aspects is that one day you feel absolutely great/top of the world/loads of energy to play with the kids/go shopping etc and the very next day you may be unable to move and even the slightest noise the kids make is so annoying that you want to scream.  Anykind of test/diagnosis/treatment is very welcome indeed.
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

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Re: M.E. ....What it means
« Reply #51 on: October 22, 2009, 03:08:04 PM »
I know some people thing ME/CFS is one of those 'made-up' conditions invented by lazy people who just want an excuse not to work or do anything with their lives but it isn't. 

The answer to that is how come kids suffer from it. The daughter of our friends suffered for years (from the age 12to21 years and still does a little) she was placed on the child protection register at first as they thought it was Münchhausen by proxy she was that ill.
Until a "specialist" agreed it was ME/CFS.
People need to know just how bad this condition is, it doesn't kill you but at times it makes you want to end it.

As for a test at least there is serious hope on the horizon for the 300,000+ sufferers in the UK alone and just maybe this will get the government to get there act together and do something about it.

Anyway, glad you found the article uplifting I new you would.

Fingers crossed Sally.

Atb
Mark

Offline Klute

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Re: M.E. ....What it means
« Reply #52 on: October 23, 2009, 12:23:29 PM »
Ooh thanks for the heads up Mark thats very interesting reading.

Im back to the "bashing my head against the doctors wall" phase lol. Specialist clinic signed me off and removed my diagnosis of me/cfs after sleep studies revealed I have mild sleep aponea. I tried telling them that wasnt the underlying problem but they seem to like closing the book on you.

Be nice when they have a blood test for this retrovirus. Funny how it started for me after a very nasty case of food poisoning.

Oh and Sally...chin up babe dont let the bastards wear you down.   :wink:
« Last Edit: October 23, 2009, 12:25:21 PM by Klute »

Offline Caillte

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Re: M.E. ....What it means
« Reply #53 on: January 04, 2010, 01:27:33 PM »
You know reading your symptoms Sally, sounds like you need to move down here to Australia.. getting warm is much less of a problem here ;)

The article is certainly interesting, though to be honest I cannot help but read it sceptically. However if they can prove a link between ME/CFS and the retrovirus that will go a long long way towards helping people that suffer from the disease.

Oh and I love working with Asperger's and other ASD kids, I find them to often be quite capable and bright students who have often missed a lot of schooling by the time I see them in high school. But they can achieve well when you give them support and understand their problems. Sometimes being a nerd has unexpected side benefits.

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Re: M.E. ....What it means
« Reply #54 on: January 06, 2010, 04:44:38 PM »
I noticed this topic browsing through your guy's forum, and something that can be good for treating ME/CFS is Reiki, which is a Japanese healing art using energy.  It's common enough in the States and Britain that it shouldn't be too hard to find someone who does it.  My mom is a practitioner, and frequently works with people who have had difficulty treating pain, fatigue or anxiety with other treatments.  Hope that helps.

Offline libertee

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Re: M.E. ....What it means
« Reply #55 on: January 06, 2010, 08:56:03 PM »
i have tried this therapy and it does work to a certain extent for alleviating certain symptoms but it doesnt work long term unfortunately...i must admit though it is very enjoyable!
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline Klute

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Re: M.E. ....What it means
« Reply #56 on: January 07, 2010, 12:14:17 PM »
I find most pain relief is very short lived. Bad past experiences with medication makes me scared of new ones.

See the retro-virus theory has been shot down by British scientists after more studies.  :(

Offline Caillte

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Re: M.E. ....What it means
« Reply #57 on: January 08, 2010, 01:13:52 PM »
See the retro-virus theory has been shot down by British scientists after more studies.  :(
Sorry to say that it seemed likely on reading the initial posting. The wording of the original article was such that I suspected they had an untested hypothesis and that was all. Ah well hopefully one day something more concrete will be discovered, by way of treatment or cause (or both).

Offline libertee

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Re: M.E. ....What it means
« Reply #58 on: January 08, 2010, 02:19:33 PM »
I find most pain relief is very short lived. Bad past experiences with medication makes me scared of new ones.

See the retro-virus theory has been shot down by British scientists after more studies.  :(

yes i saw that the other night.
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline Scutatus

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Re: M.E. ....What it means
« Reply #59 on: May 21, 2010, 02:48:10 PM »
My brother has M.E. It takes all he has to hold down his job. Almost every day he invariably gets home exhausted. By the time weekends come around he is often a spent force, with little if anything left for living a life. I am sure it has shaken his social skills. He has one friend, no woman in his life (ever as far as I know) and goes out little.  He immerses himself in his hobbies and enjoys steam rallies and air shows and the like. But getting to them is an ongoing battle. I have lost count of the number of times he has made plans, even spent hundreds of pounds on tickets for this or that - and then not been able to go, flaked out on his bed.

Sometimes, for days, weeks or even if we are lucky, for a few months, he can be more or less fine, and then - bang, all his strength and energy and motivation just abandons him. One moment he can be fine and then just as sudenly he is not. It is like he has hit a wall. What with that and the related crippling migraines one has to be so careful. There have been times when we have attempted days out and a few hours in he has turned to me and said "time to go" and that's it,  there is no arguement: day over, no matter what else we intended, because I know that shortly he will be flattened with fatigue and illness and if we hang about he'll have the nightmare of being stuck like that while out, still needing to get home somehow.

Basically he has to literrally take one day at a time, even each hour at a time, making the most of the good times, just getting through the bad times. And the bad times have been very bad. Back in his teens and early twenties he suffered badly with depression over the dibilitating nature of his M.E. He had always wanted to join the R.A.F - had joined the Air Training Corps as a kind of preperation, but the onset of M.E had brought all that crashing to the ground around him. The death of his dreams was a hard thing for him to handle. At one point he seriously considered suicide. Thankfully he told me as much in time for me to talk him out of it and show him that life was still worth living. At times he still gets dips and lows but with his parents support and mine he comes through.

He too has had Doctors dismiss his situation. The worst was when he was too ill to work and had to go for a medical to justify getting benefit, and when he mentioned he had M.E, he even had one tell him "I'll be the judge of that" - even though my Brother had suffered from it since his school days! (He is now in his thirties). That same person with whom I do not wish to share my lembas bread incidentaly, then turned to my Mother -who had accompained my brother because he was so bad - and had the affront to ask "and why are you in a wheelchair?" !!!

Even today there is an incredible dismissive snobbery in the medical profession. lt is getting better, but there are still far too many jerks out there who make life for my brother far more difficult and stressful than it needs to be. Unfortunately such swine tend to have influence and power.

For years my brother struggled with work. Luckily for him he is a very intelligent and talented fellow and he always proved his worth, but he has also always had a lot of sick days. Naturally there have been times when that has become a problem. Fortunately he now works for a very understanding and tolerant boss, who allows him to arrive late and leave early if need be - or take complete off days as and when required - all so long as the work is done by a certain time. This arrangement makes all the difference for my brother and for the first time that I know of he is happy in his work - though as I said, it still takes all he has and more to hold down.

I sympathise completely with you Sally and wish you all the best in your ongoing struggle. All my best Wishes,
Scutatus
« Last Edit: May 21, 2010, 03:05:58 PM by Scutatus »
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Offline libertee

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Re: M.E. ....What it means
« Reply #60 on: May 21, 2010, 03:02:38 PM »
I am sorry to hear about your brother, it is a condition i would not wish on anyone and unless you experience first-hand it is really hard to fully grasp how debilitating it is and how it can vary literally minute to minute.

Since Salute i have been falling asleep between 8 and 8.30 most nights as well as napping the majority of days between 10am and 2.30pm but i just cant shake the exhaustion.  Stress with staffing and postal issues caused by (mainly) the volcano adds a new dimension to the exhaustion as somedays i literally have so much chaos to sort out that going to sleep is a luxury.

At least here on the FOD i know i can say "sorry guys i feel sh**e right now i need to sleep, sorry i havent done X, Y & Z today i will do it tomorrow" and i know most people will understand.

I have found over the years that the medical profession is getting more understanding gradually and my current GP is very good, she keeps on board of any latest developments and i quite happily play "guinea pig"...lol!
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline Scutatus

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Re: M.E. ....What it means
« Reply #61 on: May 21, 2010, 03:09:54 PM »
:)  I'm glad you have found a good Doc. It isn't easy. Hope the Guinea Pig Trials pay off.

Hang in there, you do so well to keep on keeping on, with everything that you have to cope with, and of course we'll understand if things don't always quite go to schedule. Every new release, every new attendance at a trade show, every new post right here to your adoring public, is an achievment in itself. To hell with schedules! :D

So if you need to rest you go right on resting! We'll still be here after. :) I don't think I speak too out of turn if I use the Royal "We" here. Ahem.

Bless you Sally.
:applause:
« Last Edit: May 21, 2010, 09:05:58 PM by Scutatus »
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Offline sagunt

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Re: M.E. ....What it means
« Reply #62 on: September 07, 2010, 12:16:22 PM »
Sally, Radio Scotland is running a segment now with the director of the Young ME Sufferers' Trust.  I'll send you a link to the interview and online resources offered in connection if you want.  PM or email.

This is as close as I'll be able to get you to it.  http://www.bbc.co.uk/programmes/b0079mr1

The dates of programmes are on the left.  It should be up as an archive (available for 1 week) starting today at 1pm.

a'best,

s
« Last Edit: September 07, 2010, 12:20:17 PM by sagunt »

Offline gi6ers

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Re: M.E. ....What it means
« Reply #63 on: September 07, 2010, 03:03:31 PM »

Offline libertee

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Re: M.E. ....What it means
« Reply #64 on: September 07, 2010, 06:20:08 PM »
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884

quite a small study though TBH...

that link took me to a total of 3 videos, thanks Matt. 

Eric, I shall try and get to listen to the longer I-Player ones later when the kids are settled, thanks also.

An interesting point about the white bloodcells being damaged as every blood test that i have done routinely every few months since 1997 has shown that my white cells are damaged, also i have anti-bodies to Epstein-Barr at permanently quite high levels.
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline RogerB

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Re: M.E. ....What it means
« Reply #65 on: September 07, 2010, 09:11:51 PM »
I'll have to have a look at those vids when I get back to the UK (flying back tomorrow).

Offline libertee

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Re: M.E. ....What it means
« Reply #66 on: September 15, 2010, 10:21:51 PM »
a few more reports that had slipped under my radar, worth reading Roger if you havent already seen them.  I also got referred/recommended to a new book http://www.amazon.co.uk/Overcoming-Chronic-Fatigue-Mary-Burgess/dp/184901132X/ref=cm_cr_pr_product_top

although this one is my bible...i have got an edition from 2000...perhaps i need a new one! http://www.amazon.co.uk/Thorsons-Health-Chronic-Syndrome-practical/dp/0007333552/ref=pd_sim_b_5

http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline RogerB

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Re: M.E. ....What it means
« Reply #67 on: September 16, 2010, 09:30:09 AM »
Thanks, Sally.  Right now I'm fighting jetlag on top of it all...ugh.  I want to sleep at the right time.