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Setting goals also implies that recovery is possible, and if you don't recover then it's your moral failing for not putting in enough effort, or as they like to say, doing it wrong.

Exactly, but people have been discharged by then so they don't see the damage and harm done - also because there's no long term follow up. I was asked to set a goal at the clinic (I wanted to be able to go to the supermarket and do my own grocery shopping) and I had no idea how they expected...

I really wish we could say this to more people. There seems to be a fundamental understanding barrier as they will just look at us with confusion and say "but, we are helping" and wilfully or genuinely not understand that you cannot rehab your way out of something you haven't treated. Rehab...

This letter letter is excellent. A critical review of BACME and their approach is long overdue. They have no oversight or peer review and collect no long term follow up data. And then there is this; Which cannot be said loudly enough, often enough or in enough rooms where decisions are made...

Again, it comes back to how do we increase pressure/shame the government, as this is an abdication of responsibility.

Excellent article. I don't understand why rehabilitationists and others think that we're not entitled to the same medical care as the rest of humanity, and instead we should either adjust to our reality and make the best of it and focus on our values, instead of asking for biomedical research...

Exactly; there is a narrative being created, twisted and directed by those with power against those who have/are perceived to have none. Responsibility is being reversed so it is on the patient as an individual to resolve system level issues. Jiddu Krishnamurti: "It is no measure of health to...

I also set up ME Local Network, which has 32 local support group members, and is part of the DHSC Delivery Plan task and finish group, and I (with members of our local group) regularly meet with our MP, and I write a lot of emails and consultation responses. Mostly on benefits, but also on the...

As I said above, we need funded biomedical research. We also need to change the culture and narrative about ME & LC. It's less an either/or and more a both+and. As my study of biology ended at second year degree level, I can only work on the area I am qualified for.

As psychology graduate with an interest in epistemic injustice and how discourse is used to prioritize certain narratives and delegitimize others, I feel that there is a use for the discipline, even if it has been used against us, I think using the language they understand maybe the only way to...

It is still an abdication of moral duty and responsibility not to provide that funding and then blaming patients for the consequences of their failing. This seems to be a circular argument, research is not done so healthcare is not available leading to a bait and switch to make patients...

Then the government have a responsibility for funding that research, as surely they have a duty of care to their constituents? I am suggesting that this is a systemic issue and not responsibility of patients to solve. They are abdicating responsibility for care and then blaming patients for...

Why is it up to patients to re-evaluate their lives and lower their expectations? This is letting medicine and research abdicate responsibility for doing their one job; provide health care, resolve the illness impacting a person's life. It is not up to patients to move the goalposts to let...

I see Tessa Munt MP has asked for copy of the FOI

Thanks @Trish

I do the exact opposite of what they say and send every piece of evidence I have, including my original diagnosis letter from the clinic from 2013. However, I was in the fortunate position that I had been seeing the long covid clinic last time I was reviewed for PIP, among other things, so...

I set up ME Local Network (MELN) in 2021. It is a national network of local support groups of people living with ME/CFS. We now have 32 member groups nationally and are members of ForwardME, the DHSC Task and Finish finish group for the ME/CFS Delivery Plan and the steering group for ThereForME...

Or complete abdication of responsibility and failure of duty.

If we have 404k pwME and 1.2m pwME; why is uptake always *so* low for advocacy? How do we make it easier for people to engage with actions so we can leverage numbers and apply more pressure? Being loud, applying pressure and shaming whichever government is the only way that they are ever going...

Genuine question: how?