UK House of Lords/ House of Commons - relevant people and questions

JellyBabyKid said:
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.
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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.
 
JellyBabyKid said:
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.
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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?
 
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BrightCandle said:
Many of the charities backed PACE and its outcomes
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Which I, clearly naively, thought they had learned from, and yet, here we are again.

Trish said:
the MEA poured over £100,000 of money donated for biomedical research into a joint questionnaires project with BACME
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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.
 
Peter T said:
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.
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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.
 
Sean said:
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?
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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
 
Tao Fogger said:
Advance notice has been given of a short debate in the House of Lords on June 18th 2026:
"The treatment of, and research into, severe myalgic encephalomyelitis" – Baroness Scott of Needham Market

I will try to remember to post a link to the debate transcript on the 19th June (which is when it is likely to be made available), but if I forget, do feel free to remind me.
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Does anyone have a link to an official notice of this?
 
MeSci said:
I really don't know, but AfME were terrible before Sonia Chowdury became prominent, as illustrated here: https://www.s4me.info/threads/rethinking-the-treatment-of-chronic-fatigue-syndrome—a-reanalysis-and-evaluation-of-findings-from-a-recent-major-trial-of-graded-exercise-and-cbt.2282/post-41444
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The turn around has actually been very slow and taken a lot of lobbying.
@Trish has done more than her fair share :emoji_medal:
eg
Trish

Thread 'Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy'

Following discussion on this thread I have now sent the following personal letter to Sonya Chowdhury, Chief Executive of the UK charity Action for ME about their current web page of advice about Graded exercise therapy. I will post any response I get on this thread.

Sonya Chowdhury
Chief Executive
Action for M.E.

Dear Sonya,

Re: Graded Exercise Therapy

I have had ME for 30 years and am the sole carer for my daughter who has had ME for 22 years. We are both currently housebound and mostly bed bound. It is therefore of great concern to me that information provided by ME...
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Trish

Thread 'Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals''

Following discussion on this thread, I contacted Action for ME to express concern about the document and ask for the research evidence on which the advice in the document was based. The staff member who replied asked me for more details of my concerns and seemed bemused by the idea that there needed to be research evidence.

I therefore decided to write a personal open letter to Action for M.E. detailing my concerns and asking that the document be withdrawn.

Here is the letter. It has been sent, so please don't waste time and energy proofreading it or making suggestions...
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Trish

Thread 'Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template'

I have just sent the following letter to AfME, signed by 15 forum members, including the 5 available committee members

To discuss the document and AfME's promotion of it, go to this thread:
https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/

_____________________

To Sonya Chowdhury, Action for ME Chief Executive
and Roger Siddle, Chair of Trustees of Action for ME.

Dear Sonya Chowdhury and Roger Siddle,

We are writing to you to raise serious concerns about a document you are currently promoting and to urge you to withdraw it...
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Sonia has been CEO since 2012. AfME worked very closely with Crawley and Hazel O'Dowd for several years under her leadership. There has only really been an improvement since the new guidelines debacle, all the more noticeable because of the MEAs apparent change of stance.
 
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