M.E/CFS Parliamentary debate
This is our moment.
Carol Monaghan MP has secured a parliamentary main chamber debate on M.E on the 24th of January. This is monumental. This is how we affect change. This is how we make our voices heard. A previous and successful debate in 2018, began to unfold just how dire the situation is for patients with M.E/CFS in the UK (of course, we know this is a worldwide epidemic, but this is UK politics) and with our strong voice, we can try and make this one all the more impactful by urging as many of our Members of Parliament to attend as we can.
Enough is enough
For too long we have been forced into the shadows existing only to those who stand by us. For too long we have been missing from the world, discrimated to by the media, by medicine, by society.
For too long we have suffered, not only the agony of the illness but the cruel and unjust treatment of an uninformed world.
Now we have a chance, to have our political representatives tell our stories and fight for our rights; the rights that are so easily granted to others.
When we have politicians who will fight for fairer funding, for the end of ‘treatment’ protocols that have caused much, much harm and vow to investigate the controversy of a medical trial (PACE), so flawed Carol Monaghan MP claims:
I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.¹
well then we can hope for a future with M.E.
So how?
This can be monumentous. So I urge you to contact your MP. Tell your story, tell your friend’s story, your neighbour’s and ask them to support you.
ME Action and action for ME have made it very easy to do with simple click and go forms in which you select your local representative and can chose to send an email with information of the debate and need to know facts and/or the ability to personalise the email should you wish to.
Let’s make our voices heard in solidarity.
¹—Carol Monaghan, PACE Trial: People with ME, House of Commons Hansard Debate, Feb 20, 2018
Help to make this important. So many have been suffering in silence. It’s time for a change. Time to fight forbthe ones who are suffering in so many ways xx
Thanks so much for your support xx
I have m.e & fibro I was diagnosed last year after suffering pneumonia after a general anaesthetic,also whilst going through a very emotional stressful family crisis. Looking back over the years I’d had it longer but lot milder but still suffered .not been able to go to events ,having to let people down as I was ill again ,continuous infections & antibiotics.taking weeks even months to recover ,referred to different specialists ,E.N.T & gastr.Having constant flare ups of ill health & same time trying to push through it ,having 5 children & working self employed,felt alone & no help & all I wanted was a diagnosis & acknowledgement that I was ill.I wanted to know what it was so I could get help & get back to not letting other people down or myself .i took on extra jobs as I’m getting married ,to only have to give up when I crashed in health last September,leaving me now struggling to run my own business I’ve run for 20 years .Having to spread work out ,cancel clients ,lose business ,not having energy for extra things in life .Having to rest regular ,dreading going to bed not knowing what tomorrow will bring as it can change by the hour even ,ok then totally wiped out,breathless ,fatigue ,pain ,heart palpitations,shaking ,tingling fingers ,head fog,no concentration span ,no multi tasking,swollen eyes ,blurred vision,sensitive ears ,cracking jaw,heartburn ,swollen tummy,IBS….to list most of these I suffer intermittently.We need help ,acknowledgment,allowances help us work & not let income suffer & cause more stress,disability badge to park nearer to store some energy levels,more funding for tests ,deep tissue massages,support groups ..please help I’m one of the millions suffering ,I’m 43 self employed,mum of 5..not depressed ,only fed up with this disease ,my children deserve this too .Otherwise I love my life ,my work ,friends,family & partner & I just want to enjoy life with them ,not be a burden & pressure on them.we all deserve help
Nicola
Hi Nicola, thanks so much for sharing your story with me and my readers. I’m so terribly sorry for all of your suffering. While I can’t relate to being a parent, I can relate to the dreadful nature of this disease and how it bulldozes your life. People don’t understand how every aspect of your life is affected and how desperately difficult that is to deal with when there is no support or help out there. We’re not treated the same as other diseases out there, who actually have a better score of ‘standard of life’, then us and that is incredibly unfair. We have to fight not only the illness but society and government for our basic rights; a burden in itself. But this is how we make change. This is a massive change. In the 18 years i’ve suffered M.E, we’ve never managed to have action like this before, so this is promising. Don’t loose hope. We can fight together, in solidarity.
Thank you for reading my post. You’ll find more posts on my life with M.E in the ‘Health & welling’ section, under ‘Chronic illness & My illness My thoughts. If you’d also like to join a support and awareness community I run on instagram, you can find that at http://www.instagram.com/myillnessmythoughts Sending gentle hugs, Amy x