M.E? All Talk, No Action?

Originally I was looking to write a piece for M.E awareness month in  May, in fact I started writing it three times and then deleted it (no mean feat when your primary symptom is exhaustion?) but I just kept getting frustrated by it all, and as I wrote I kept thinking what's the point? 31 yrs in,  still campaigning, still ranting, still writing and still have M.E? The injustice to M.E sufferers continues, I believe those with Long Covid are being treated in a similar fashion, and the  DWP have already been told not to accept Long Covid as a disability?  Maybe they need to refresh their brain cells as to what disability actually means?  

"A physical or mental condition that limits a persons movements, senses or activities"

you only have to type into a search engine "Explain the word disability" for a whole heap of explanations to pop up and yet the DWP have a ( secret not so secret) list of illness they've been told  not to class as a disability? Everything is designed to treat disability as a crime or at the very least a nuisance. 

When I saw the headlines all over social media about Sajid Javid promising to tackle the "incredibly disabling condition" I was angry, angry because he's acting as if  M.E is some new kinda thing. I did write and ask why it has taken so long, would it just be another empty promise and would M.E sufferers and their carers ever get an apology for the decades of abuse & mistreatment? Obviously he didn't respond, but having spent the past 31yrs writing letters to Prime ministers,  MP's and various government depts I'm really not surprised. 

The thing that's got my goat is that back at the beginning of getting ill the figure 250.000 sufferers was being banded about , fast forward to today and it's the same data  being banded about, now i'm no scientist or mathematician, but even I know it can't possibly still be the same figure? Once again I've written to the World health organisation, NHS & Government  on a number of occasions, with absolutely zero response.

Some may call me a cynic, I prefer realist but unless we see  appropriate action I do not trust Sajid Javids spiel, and on the subject of  action ,let's talk about  charity Action for ME. Now this is a tough one for me as some of you that have followed my journey will know I once had a Column in the charities quarterly magazine, and while I will always have a love for the organisation in it's early days, there is no denying it changed, to the point there was mass exodus of membership when they started towing the government line in the hope of getting their foot in the door regards  funding.

It was an extremely difficult and stressful time because I was being hit with private and public messages from long time followers and friends in the M.E community asking how I could stay, they felt I was betraying them. But I stayed because sometimes it's too easy to walk away and I hoped that  I could express peoples disappointment and stop the Charity from going down the road it was heading. However, it became apparent that I wasn't going to change any minds and they were comfortable in their decision and so with heavy heart I did eventually leave a few months later . 

And now the government have partnered with Action for ME, and remembering the earlier days of mistrust in the Charity, I have to say this makes me feel very uneasy, you have a government that can't be trusted working with a charity that  can't be trusted? 

As tough as it is, sometimes you have to stand by your beliefs because its the right thing to do and not pay lip service just to maybe get something you want? I guess the worry is now they've got their foot in the door what are they prepared to do, we already know they are willing to tow the party line?  You see this is what happens when you lose all trust?  The government have spent decades pushing and funding the narrative that we're all a bunch of  fruit loops, Prof Wessley was knighted for that very same view and at every stage of the game whenever we've tried to speak up, defend ourselves against this dangerous misinformation, we've been portrayed as evil activists, threatening murder on anyone who disagrees?   And now all of a sudden we're expected to believe the Government have  had a change of heart and are going to start taking M.E for the serious physical illness that it is? 

The first thing that needs to happen is to stop the DWP treating M.E sufferers and disability in the disgraceful manner that they do. M.E comes with numerous complex symptoms and yet we're required to have documented evidence that each symptom exists,  That alone shows the absolute ignorance we're dealing with. I've actually invited DWP agents to spend the day, night or both because I can't bring on symptoms to cue for their pleasure within a certain short time frame of their visit?  Naturally they declined. I also pointed out that's it's been well documented that while there is no argument that it exists, due to M.Es complexity  there are as yet no established bio markers to scientifically prove it's existence for diagnosis purposes, so then how are we meant to give documented evidence for each symptom of a whole illness? 

In a nut shell, they weren't interested, they just repeat the same spiel that they don't make the rules and are just doing what the government have asked  them to do. This is why if Sajid Javid is serious about helping M.E sufferers I'm urging him to look into this and get it changed. Diagnosis, treatment and cure is important yes,  but we have to live in the meantime, and living with better understanding and not treated as criminals by one of their own departments would be a great start.  

However I for one wont be holding my breath that any action vaguely significant will be  happening anytime soon, not that I want to be sitting here in another 31yrs saying " I told you so" but I think you catch my drift? 

I'm interested to know how you are all feeling about this latest  development ? 

                                                           Til next time, Stay Blessed

                                                                 Back Before Elvis

                                              



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