ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

maytaurus

CJ

A Hummingbirds' Guide to M.E.

http://www.ahummingbirdsguide.com/

if you click on the M.E. symptom list you will see that it includes
'blurred vision, wavy visual field, and other visual and neurological disturbances'

• 
  
• Onset of a new type, severity or pattern of headaches is common. See also the PAIN section
  
  
• Dr Hyde explains that M.E. can cause a unique type of ‘severe headaches of a type never previously experienced.’ This is often associated with neck rigidity and occipital pain (pain/pressure felt at the base of the skull, the top of the neck) and/or retro-orbital eye pain (pain behind the eyes) and also sometimes pain behind the ears (or one ear).
  
  
• Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest) can occur, as can hypoglycaemia headaches (generalised prickly ache over the top of the head)'

Keep up to date with all the new additions to the site by email here!
http://www.ahummingbirdsguide.com/websiteenewsletter.htm

They also have a Yahoo group, see here for info;
http://www.ahummingbirdsguide.com/supportgroups.htm

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CJ

Hello Everyone
Like everyone else I know about the blurred vision, spacial disorientation and all the other eye stuff.My light sensitivity is so bad just now I am doing my Jackie O impersonation on a regular basis and am only really happy in the evening in artificial light.
When I had mine tested 4 years ago he said I had the circulation behind my eyes of someone 20 years older and it could lead to macular degeneration if I couldn't halt its progress. He wanted me to see a specialist then but my gp and I thought it was ok and I started taking lutein.This new one has again found that and as pics were not taken the last time he doesn't know if it has progressed. He says he has concerns about my lower peripheral vision but I think if he did that part first it was more of a cognitive problem. He was already having to do it in 30 sec bursts because I couldn't focus long eneough and I could feel my covered eye trying to kick in to compensate. He also found a problem behind the lens of my bad eye which suggested the start of a cataract but wasn't so he doesn't understand what is going on and to be on the safe side he is sending me to someone who does.
On a positive note he said my eyesight wasn't that bad which is why he is confused!!!
I don't know about everyone else but I think stress and fatigue make my eyesight worse and I am still having bucketloads of that just now.
I was going to add some info that Neil Abbott sent me but they are files so I can't do it 2005 Crowhurst Nursing Standard ME/CFS.

He also sent some research from Russia 2004 showing vascular problems in the eyes of ME/CFS patients and thinks it might be worthwhile keeping it in mind for research/ articles in the future

What else do we have to look forward to with this illness that is not supposed to be worth bothering about?

Thanks for all the links Maytaurus I will check them out soon, thought the pain behind the ear was interesting because that it quite a new symptom to me( as far as I can remember) but it was horribly painful when I woke up last week and moved into what I call an ME headache

vikki_louise

hello, i had an idea for raise a fiver for ayme (AYME helps under 26's who have ME and are asking members to raise £5 each this year) but never got around to it (bad patch and too much other stuff to do), i got carried away buying petal candles when i found them after having wanted one since seeing them on some japanese thing years ago. So i figured instead of them sitting there i could sell some to raise my fiver for ayme.
You put them in the top of a cake and they look like a closed flower, you use the taper (included in the box) to light the center, it shoots up like a mini indoor firework then the petals open to show a lite candle on each one and it plays "Happy Birthday"

they look so much better in real life than my dodgy photo!
Im selling them for £4.50 which is a little more than i brought them for so 50p from each one can go to AYME, not sure if i will raise the full fiver but im not up to bigger fundraising right now.
I set up a blog recently but not sure if im allowed to post it (its got the details of how to order one). the link is http://vikkishandmadegifts.blogspot.com/
mods please feel free to edit if its not allowed, if its edited please pm me for the link. my websitses under construction but i put the petal candleson, about half way down

CJ

I was just about to post that link as well!!

vikki_louise

I need a rant

i joined a facebook group (http://www.facebook.com/home.php?ref=ho ... 212&ref=nf) aiming to raise awareness of MILD cfs, apparently it left one boy so tired he couldnt play a whole football match any more and he fell over when running for a bus.

I posted about the fact i was trying to raise awareness of severe ME (as there are people with ME on the group) asking if anyone could help, i just checked back and saw the admin had told me to "shut the F up vikki g, go get a life".

:mad:

How lovely, nice to know other people aiming to raise awareness of the same illness just a different level are supportive of others!

It reminds me of a lady who goes into the shop where my mum works, this lady knew how ill i was (about 5% on the ayme scale (bedbound, barely able to roll over let alone do anything else etc at the time) and would moan non stop about how tragic it was that her grandson would feel tired the next day if he had spent the entire day playing cricket, on and on and on she would go every single time she saw my mum, one giant pity party!

Its been just under a decade since i could run for a bus, its been 9 years sincei could even WALK to a bus, some people :mad:



I should add im not taking away from what peoplewith mild ME go through, i went through it too before mine got worse

urban_spirit

Hi Vikki_louise

The shopkeeper - dont you just love it when ppl say things like that? :rolleyes: The same as telling peeps you have ME to get the reply 'oh I think i've got that too cos i'm tired a lot'-!!! I dont mind them not knowing and asking about it,would be happy to help.

Facebook -can you report admins reply to someone higher? It is totally not acceptable for them to respond like that.

Have little ((:smileyhea)) hug from me.

Trialia

mardatha wrote: »

I always say its only the ones who are fit and healthy but tell fibs who get it !! cos the ones with ME sure as h*ll havent got the energy to fight for it.

Exactly what I say - I have severe fibromyalgia, which isn't all that dissimilar to M.E., and we get much the same attitude. (I know this post is old, but didn't see the thread before.)

sleepymy wrote:

As time has went on I've noticed that I share many of his symptoms i.e. memory, concentration, word finding etc. Not only that we have problems in these areas, but quite similar problems.

*nods* Got all of those, too. Sigh. Sometimes I wonder if we should have a collective ME/FMS thread, since the two conditions have so much overlap... What do you think?

breezerockz

vikki_louise wrote: »

I need a rant

i joined a facebook group (http://www.facebook.com/home.php?ref=ho ... 212&ref=nf) aiming to raise awareness of MILD cfs, apparently it left one boy so tired he couldnt play a whole football match any more and he fell over when running for a bus.

I posted about the fact i was trying to raise awareness of severe ME (as there are people with ME on the group) asking if anyone could help, i just checked back and saw the admin had told me to "shut the F up vikki g, go get a life".

:mad:




How lovely, nice to know other people aiming to raise awareness of the same illness just a different level are supportive of others!

It reminds me of a lady who goes into the shop where my mum works, this lady knew how ill i was (about 5% on the ayme scale (bedbound, barely able to roll over let alone do anything else etc at the time) and would moan non stop about how tragic it was that her grandson would feel tired the next day if he had spent the entire day playing cricket, on and on and on she would go every single time she saw my mum, one giant pity party!

Its been just under a decade since i could run for a bus, its been 9 years sincei could even WALK to a bus, some people :mad:



I should add im not taking away from what peoplewith mild ME go through, i went through it too before mine got worse

What horrid people,:mad: i had a look, and have reported them,
I have really quite bad ME myself, and you would think that your joining to support them would be received in a better way than that.

maytaurus

I'd really given up on this thread as you can see :rotfl:
But For anyone who is really interested
you might like to have a look here or not ...

http://forums.moneysavingexpert.com/showthread.html?t=236472

Trialia

Well thank goodness for that...