V.R.T.
Senior Member (Voting Rights)
Agreed and this is why appeasement of BACME types will never work.
UK House of Lords/ House of Commons - relevant people and questions
- Thread starter Sly Saint
- Start date
JellyBabyKid
Senior Member (Voting Rights)
Yes. I cannot understand how MEA got here.
I find it terrifying that they are taking us in exactly the wrong direction and at great speed.
Peter T
Senior Member (Voting Rights)
For several decades, there has been a reasonable possibility that withdrawing the specialist services here in the UK would see improvement in long term outcomes. For the existing services to provide more of the same for those with severe or very severe ME/CFS would be horrific. It is so hard to understand how the charities, especially the MEA, are not screaming this from tge roof tops.
BrightCandle
Senior Member (Voting Rights)
Many of the charities backed PACE and its outcomes. I am not all that surprised to find them backing the latest exercise rehab schemes.
Not long ago the MEA was led by a person who wrote articles twice that told patients to exert more and the entire board stayed quiet and didn't even fire him for 6 months waiting to see just how much damage the backlash would do before deciding keeping him was actually a liability. Clearly those that run the MEA agree with patients exerting more to improve, they just don't want to say it because it will harm subscription income. There was no outrage from them on his article and nothing since to suggest they are against the rehab model at all.
Are patient 'representatives' going to end up being our worst enemy?
How does every hard-earned step forward end up being so easily hijacked by the psychosomatic-rehab cult and perverted back to their benefit and make us worse off?
What the hell is going on? Is governance really that broken? Are we really such contemptible pieces of disgusting peasant scum to them?
Why do they even bother going through the act of pretending to care? How much more brazen can this cruelty get?
Can somebody please explain what we have done to deserve this endless ruthless assault from all sides?
How does every hard-earned step forward end up being so easily hijacked by the psychosomatic-rehab cult and perverted back to their benefit and make us worse off?
What the hell is going on? Is governance really that broken? Are we really such contemptible pieces of disgusting peasant scum to them?
Why do they even bother going through the act of pretending to care? How much more brazen can this cruelty get?
Can somebody please explain what we have done to deserve this endless ruthless assault from all sides?
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JellyBabyKid
Senior Member (Voting Rights)
Which I, clearly naively, thought they had learned from, and yet, here we are again.
This makes me incandescent with rage and feel completely powerless that we will ever make progress. I am beyond frustrated, and actually quite scared as to where this is going.
Good people are using all their energy, and doing everything possible, to move us forward and then our own charity undermines and undoes that in a few actions - and using money raised by pwME.
There are no words sometimes.
JellyBabyKid
Senior Member (Voting Rights)
Exactly, instead they seem to have forged a partnership for more of the same, but worse, faster. And only ask people for their opinion where they are new to the illness so don't understand the history, and/or think that something is better than nothing and are grateful for anything, without realising that the something being pushed is not benign and a filling a gap, but actively damaging and erasing of the illness itself and is doing the DWP and government's job for them; minimise reality, push people into work and to hell with the cost to patients, all while claiming to have helped, while doing the exact opposite.
MeSci
Senior Member (Voting Rights)
I really don't know, but AfME were terrible before Sonia Chowdury became prominent, as illustrated here: https://www.s4me.info/threads/rethi...al-of-graded-exercise-and-cbt.2282/post-41444