There is no help – final message of woman with ME

I’ve lost 8 years to ME and no one without this disease can begin to understand. We are sold a myth that you can push through and overcome anything. Well imagine if that is your personality, and you have all the drive in the world, but with every push instead of overcoming, you’re knocked down further.

It’s like trying to get ahead and being beaten for trying. There is no win. There is no out. There has been very limited research. It’s relentless, and fatigue feels like such a minimal aspect that healthy people can’t begin to understand.

It’s not just that we get tired from doing things. We become MORE disabled. My body completely falls apart every time I try, and I gave to stay in bed for days, sometimes unable to move or speak, to tolerate light, sounds or touch. It’s like a sick game of limbo and the bar just keeps getting lower. Her analogy of a web that tightens is so apt.

It’s no wonder the suicide rates are so high in this illness… It’s not a cause. It’s an effect. And it’s not even indicative of a mental health problem. Sadly, we are in circumstances where many of us actually UNDERSTAND the choice. It’s not just an irrational moment of crisis. These patients are considering it for years. Such is the state of the situation.

Gaslit for decades, told its in our head despite an abundance of evidence to show the opposite. Limited funding for biological research, it’s been wasted on faulty research to ‘show’ it’s psychosomatic, in patient groups where they don’t even confirm they have M.E. before their treatment works. (M.E./CFS has a defining unique symptom, PEM: Post exertional malaise. It’s the death grip that makes us worse after activity, and it can come on up to 3 days afterwards, so people think we’re OK because they don’t see the fallout). The research needs to include PEM as a critical element to ensure their participants actually have M.E, but a lot of the faulty research that claims it’s in our head don’t even bother.

There’s an inquest happening right now into Maeve Boothby O’Neill. And many other severe M.E. patients at risk of death under the poor care of the NHS right now. Not being fed, and being kept on conditions that trigger continual PEM due to too much light, movement and stimulation. Imagine being so sick you can’t swallow or sit up, or tolerate any light or sound? And having doctors deciding you’re mentally ill or anorexic? This belongs in the Victorian era. Not modern day Britain.

Until we have acknowledgement that this is biological, and a very severe and serious, multi systemic and life robbing illness, and until we have funding for research for treatments, and social support and insurance companies that don’t have the psychosomatic excuse to avoid paying out, patients will continue to choose suicide. We’ve been begging to be heard for decades. And begging for hope.

And for anyone reading this who is suffering so badly and feels this is their only out, please do hang on if you can. I do think the tides are turning. The research is moving faster now. Long covid has helped that. The validation and maybe some relief with treatments (dare I hope for a cure??) are on the horizon. Class action lawsuits to follow. I keep watching the post office scandal and thinking, when will we be heard? I call it the reckoning, and I can’t wait for it.

If you are healthy and reading this, please please take the time to research the scandal or watch these videos. We need healthy allies.

https://www.dialogues-mecfs.co.uk/films/the-tangled-story-of-me-cfs/

Wow the lobbyists are working overtime. A random story everyday.