Hope for a Better Moment by Linda Crowhurst

A video for ME Awareness Month 2007 that asks for a rethink on service provioion for people with severe neurological ME.

Category:

News & Politics

Tags:

• severe
• ME/CFS
• Services
• ME
• Awareness

[violettfem]

Thank you so much for making this and raising awareness. I was referred to you by another person w/ M.E. and I am so glad she did.

I no longer feel so alone.

~Vi

[gregcrowhurst]

This means everything to me - that making the videos makes a real difference in peoples lives.Thank you so much Linda

[twopointsix]

The line about throbbing really resonates with me. I was just thinking today, if they do not develop any effective treatment during my lifetime, and if I do not make any vast improvments, I will probably be aching, throbbing and burning the rest of my life. I think the pain is probably worst from the point of view of second in, second out, neverending... at least some other symptoms are come and go for me (such as paraylsis etc). The pain really is so grinding

[gregcrowhurst]

Thank you so much for your comment - it helps me to know that what i say really does resonate with others. I am so sad for your pain and send you love.

[835283]

I had a roommate with the disease M.E and he was forced to take heavy anti-psychotic drugs everyday which made him worse and they kept forcing him to take it. I was in a mental hospital with him in 2009 and they forced the same drugs on me also which made me throw up for 3 months which in the end gave me M.E destroyed my immune system. I haven't heard from my friend since 2009 when was was forced to take drugs as he was sectioned for having M.E, horrendous what I witnessed him go through, MY GOD

[LuvTeal1]

Dear Linda, I initially found your husband post. It's now said that there are 250,000 affected in the UK, 1-4 million in the USA, and 17 million worldwide. You have a good husband and despite all your suffering are truly blessed. I've been ill since 03 Jan 1975, over 35 years, and now with congestive heart failure, & don't know how much longer I have. My husband was horrible and I had to leave him despite my condition. But, I'm not totally alone. I have four loving cats. Bless you both.

[DadsBlueAngel]

I UNDERSTAND.

[nikej26]

please my sisters join the sprit of islam and pray like muslims praying atleast do it in home fast like them begin now and you will see the difference. ı love you my sister. do it soon . may allah bless you.

[pilomaya2012]

whats that shaking shudder that s happening to you i get it sometimes?

thanks so much for your sharing, we are all connected, we dont need to be alone, i know how it is, feeling trapped, like being in a time warp a dark reality some times.

[Unsweet]

I subscribed after watching this. I cannot describe how deeply stumbling upon your videos has touched me.

If I could make you well... I would. You must feel so trapped; I can't even imagine. It is absolutely heartrending.

<3,

[unsweet].

[Bluebottle83]

Thank you for highlighting that there's never any let up from this hell, not a moments respite - we cannot crawl out of our own bodies for a brief cessation to our symptoms. We cannot even have the blessing of sleep. Yet all we are offered is the insulting and harmful graded exercise and cognitive behaviour therapy by staff trained to believe that we have a form of hysteria instead of a serious life threatening neurological illness.

We need money put into biomedical research and treatment NOW

[arababoon]

Sorry Linda that you are so unwell with this severe illness....l myself have had this disease for 7 years with no help....my life is also devastated......l like you live in hope for a good day....l feel l have been lost in the despair of this disease....its truly shocking the way we are ignored and neglected....understanding is half of the treatment l think.....medical treatment is there l think its all a question of money...in my opinion