Walk for ME

[*elphaba*]

Some of you know that my sister has ME/CFS. 

I'm joining in the Walk for ME during ME/CFS awareness week (6-12th May)  to raise money for biomedical ME research.    For too long this disease has been misdiagnosed, mistreated and sidelined, and misunderstood by the general public.  

I'm walking as much to banish ignorance about the condition as I am to raise money  so would be grateful if people just read the below (I'll put it in the first post to avoid a huge OP).     

I won't put the link, but I have a Just Giving page which can be found on the site as 'page for Bev and Nim' and perhaps if after reading you feel so moved to pop over there.....well, I'd be grateful. 

[*elphaba*]

Thank you all so much :-x    To Maggie and Fluffy for sorting links as well xx

My sister will be so very touched when she sees this.  As am I - very much so.

I have just read a very moving PM from an ME sufferer, and I will reply to that person when I'm a little less tired and emotional  (and thats not a metaphor for 'as a newt' honestly!) 

ME/CFS people have to cope with this disabling condition, and sadly with the disbelief and suspicion that some still hold that they are hysteric malingerers.   Information is gradually overcoming ignorance though, fingers crossed. 

[fluffypenquin]

Just hopes it helps you to reach your target:-)

You take a long rest and take care of yourself:-x

[bevluvsrats]

*hobbles in due to lack of spoons*

Hi all, I'm Elphaba's sis, I just wanted to thank you guys for your donations towards the walk she'll be doing. She completely knocked my socks off when she told me she'd be doing it.

It's such a bloomin' 'orrible condition to live with, it really does need further research and understanding, and anything to raise money and awareness of it is a fantastic thing.

The majority of people just don't think twice about each an every activity they do in a day, but for me, quite often I have to plan my life days, sometimes weeks in advance, and that includes little things like when I'm going to have a bath (just did, which is why I'm so spoonless currently) or make something substantial to eat (usually I do something as easy or quick as possible in the microwave so I'm not fiddling around in the kitchen.) (ooh, reminds me, I've completely forgotten to eat dinner today having slept through dinnertime).

Anyway, seems to me that you guys know all about this, and are some of the low number of the population that actually understand this. I'm sorry that so many of you know about it from your own experiences. 😞

Thank you one and all, and if you know someone else who might be able to donate, please spread the word.

I'm off to microwave some Super Noodles.

Bev x

*crawls out*

[*elphaba*]

:O:O:O:O:O   

I've just seen my total!     My goodness, you lot are stars :-x   I really can't thank you enough xxx

All of us can have days when we are too shattered to cook, but to have to make choices between two essential actions like eating or washing as Bev did yesterday EVERY DAY is the reality for many people with ME/CFS.  

I shall feel that I have the whole lot of you walking along with me :-x........and we are all doing it for these poor people who would love to, but can't.   

I'll take plenty of photos on the 6th for you

Thank you xxxx

[merc1_clocks]

We will be walking with you elph...& looking forward to piccies:-x

[stroppy*cow]

I just hope that the weather is kind for you

[fluffypenquin]

You are doing so well Elpha - there are going to be loads of us "cyber walking" with you:-)

[captainbovine]

I'll have my cyber boots on to join you elph...you're a star and hope your sis managed to eat her super noodles!:-x

[*elphaba*]

£219   !!!!!   *thud*  THANK YOU :-x

I don't mind the weather, Stroppy.   Cooler would be better but I bet we have a heatwave just in time :^O

Sadly I'm sure she did manage Supernoodles Capt........   I've had  'words' many times, but she can only manage what is in her budget as well as ability to cook 😞 

[fluffypenquin]

Doing well Elpha - perhaps before the walk you may even get a little bit more pledged:-x

[geranne28]

I have to say Elpha that I took the time to read 'my story' and I send prayers and love to your sister and Nim. 

You are an inspiration to us all though.  You will work out of your comfort zone to raise money for some much-needed research into ME.

I do a walk for Breast Cancer research each year, but I feel a bit of a fraud compared to you because Ringo and I walk 4 miles a day anyway.  Dogs are allowed to accompany fund-raisers on the Breast Cancer Runs so we have a lovely walk (come hail, rain or shine) usually in a woodland place which has lots of new smells for Ringo.

Do you see now why I feel like a fraid compared to your stalwart efforts?

Good luck Elpha.  I am so pleased that you exceeded your original £80 target. 

Thanks to Fluffy for bring attention in 'the other place'.

[fluffypenquin]

A licke gentle bump in case there are any other peeps (or lurkers) who will consider sponsoring  Elpha for this wonderful case 🙂  If so please see opening post on how to do so via the Just Giving page 🙂

[mandymoosie]

Can someone help me please.

Where is the "just giving page" ??

[mandymoosie]

All done now :-x

[fluffypenquin]

🙂

[*elphaba*]

£230 now     I'm so thankful  for all you lovely people :-x    

This is a hopeful time for sufferers with new research paying dividends. 

[borzoi369]

That is interesting & hope it gives you more oomph for your walk 🙂

[*elphaba*]

Its good that positive, biomedical evidence is being shown in the media finally.  Sickening that all these people currently have as treatment is exercise and CBT.   Oh and B12 jabs

I must apologise to a donator with initials JR who sent a donation to my PP two weeks ago - I didn't get the notification email so only just found it.  I have sent it to my Just Giving page now which is up to £263  *thud*   

:-x:-x:-x 

[*pixachu*]

I keep trying to find the "like" button :^O

Well done raising awareness x

[fluffypenquin]

Wow - well done - total now stands at £268.00:O   It just shows how much people appreciate you doing this walk Elphaba and helping to raise awareness of this condition.  Hope you get some more sponsors before the big day:-x

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