I think most of my readers will agree that M.E. is real. You may not all agree over whether it is psychological or physiological. However, NICE guidelines, and the WHO agree that it is a neurological condition. The NHS is supposed to follow the International Consensus Criteria in diagnosis and treatment of M.E.. This is why the following story breaks my heart. I've spent a little time talking with this gentleman over the last few days, but there is no way I'd be able to do him justice. As such the following is his story told his way.
I've had a wide range of symptoms that got diagnosed as ME back in the mid 80s. Symptoms were more acute then, and - bar a short stay in a psych ward when the doctors could not find a cause - I managed for years, with pacing, though I was never well enough for a job other than volunteer work. About 3 years ago symptoms started to get crippling, with severe unexplained chest and abdominal pains after even moderate exertion, so I went back to the NHS for help, but after gastro exams and blood tests came up with nothing, I was given no option but to see psychiatrists, who would not listen to my reasoning or read references that might point the way to more specific tests, but just chose to brand me as a hypochondriac.
Once given this label, even my friends stopped believing in me, and got fed up with regular trips to A&E where I was scolded for my pain rather than having it properly researched as I begged to be done. In the end, when chest pain got so bad I could only roll about in agony, I was admitted into the psych system 'for observation', with the promise that if they could not help they would pass me on to an ME specialist.
They broke this promise and decided to section me in a ridiculous effort to cure 'hypochondria' with antipsychotics. As by this time, I had split up with my girlfriend, and the council had declared my own house unfit, I had nowhere to go, so did not oppose the section. That was nearly 2y ago. My family have been gradually getting my house into what the council deems fit condition, but the NHS has only stood by waiting to discharge me rather than make any effort over my health, so when I am finally at home, I will be completely out of the system and have nowhere to turn for medical help, after having my life totally wrecked by the psychiatrists, on top of my still worsening ME.
My sister is a journalist and did put some pressure on the PCT and GP practice and local MPs, but this only succeeded in getting me moved from the acute psych lock in facility to this open 'recovery' unit. Nobody is able to fight the NHS and make them seriously look for what is making people ill, and doctors are actually offended when you ask that they should do so.
My life has been wrecked by the system and circumstances several times over, and each time I've dared to think things were beginning to look up again, I've had all my hopes and dreams dashed.
Please understand that he has told this story time and time again. He has become a dab hand at keeping it concise. As such the story as he tells it does not portray nearly half the sadness, emotion, and loss, the desperation and sense of betrayal that has been going on for decades.
He has been dumped in a psych ward, and basically forgotten. Sure, he has food, water, and a roof over his head. The basic rights promised to animals; so the RSPCA would have no problem with this. Well, I do. I have a problem with someone being treated so badly that they go in to the NHS in a bad condition, and 20+ years later they are in a worse condition.
M.E. is not a progressive condition. It is not an illness that you expect to get worse. It can get worse, but it is not taken for granted that it will. When under full time hospital care you would kind of expect for patients to improve. Yet he has not improved, he's worse. He's been treated as if they are simply waiting for him to ... what ... die? Miraculously stop being a 'hypochrondriac'? Why is he in this mess of a system when their attempts at treating him have failed? Is it totally impossible for them to consider that they were wrong, that he may not be a hypochondriac and actually has an illness that needs proper treatment? Don't be mistaken, naively believing that being in a psychiatric hospital a patient is regularly seen by doctor's, nurses, and therapists. The truth is that one only sees such medical personal at rare case conferences.
In the 80s, when he first became ill, the understanding of M.E. was very different. When the guidelines changed, why was his treatment not changed? In over twenty years, why has he never had full body MRIs, why has he not been tested for systemic inflammation as per Fibromyalgia? Why has he been abandoned? It's hardly surprising that he's depressed.
I know he's not the only one. I consider myself lucky that I was left to rot in my bed when my condition was so severe. One of my best friends, last year, was admitted to hospital for five months for treatment of M.E.. Her ward too, was a psych ward. She too received no treatment. I'm glad she was released. While in hospital she lost her accomodation, her cat, her carer. So she was released into an unfamiliar world, with no help. I was too far away, and at the time, too ill. She came out of the hospital malnourished. I can't help wondering if this other friend of mine is also malnourished? How does the medical profession expect people's bodies to recover when malnourished?
I know he's not the only one. I consider myself lucky that I was left to rot in my bed when my condition was so severe. One of my best friends, last year, was admitted to hospital for five months for treatment of M.E.. Her ward too, was a psych ward. She too received no treatment. I'm glad she was released. While in hospital she lost her accomodation, her cat, her carer. So she was released into an unfamiliar world, with no help. I was too far away, and at the time, too ill. She came out of the hospital malnourished. I can't help wondering if this other friend of mine is also malnourished? How does the medical profession expect people's bodies to recover when malnourished?
It fills me with sadness. It is so frustrating that I cannot help him. All I can think to do is raise awareness of this man's plight.
