Thanks for posting this, I know someone with this and unfortunately it’s almost identical to what this poor woman went through
How we have such a condition exist so quietly with no understanding, awareness or funding blows my mind sometimes
I have ME and completely agree with her. If you’re lucky enough to have a sympathetic GP, all they can really do for you is offer pain relief and help with symptom management. It’s a shite existence which isn’t helped by years of so-called experts insisting it’s a psychological disease.
I have so much sympathy for people suffering with ME, but triply so after fallen ill with a yet-undiagnosed illness myself.
I’ve had a gamut of tests and with no resolution in sight. Following a clear CBCT scan I’m now booked in for an MRI, but it’s been suggested to me that the pain I’m experiencing daily might have a psychosomatic origin, which is fucking terrifying for me, because I know that it’s not.
This pain is very real. I struggle managing it every single day. Having somebody turn to you and telling you that the agony your suffering with might all be in your head is harrowing, but I’ve only been dealing with this for a year now, I can’t imagine what life must be like for this lady and other victims of this illness.
Thank you for sharing. It’s so misunderstood and a truly awful thing to suffer with. As with a lot of chronic illness, those with it end up having to become experts in reading medical studies etc themselves, as their doctors can be so useless. I know someone with very severe CFS/ME and she requires 24/7 care, cannot sit up or get out of bed, and still people ask why she doesn’t just get up and go outside sometimes. The only way she got her GP to follow the guidelines was by paying for an appointment with an ME specialist who passed their recommendations onto her GP, but that took years.
What medication gets prescribed for this condition?
Yikes, this was so difficult to read. I have ME too and it really is miserable at times. I’ll describe it like this. You know that way you feel before you come down with the flu? Your whole body aches, everything is an effort, you can’t think straight and you feel like you could sleep for a month? That’s how I feel when I wake up in the morning and it goes downhill from there. I can no longer work but I can feed and shower myself which I’m grateful for. Diagnosis is really just a process of elimination so you don’t actually get a definitive answer. It’s just ‘yep, we’ve ruled out everything from AIDS to dengue fever so you seem to have ME. The psychological effects are the worst, especially when you have ignorant people around you telling you it’s all in your head or you’re just being lazy or some other such nonsense.
There really isn’t much in the way of support either. When I was ‘diagnosed‘ at Edinburgh WGH almost 20 years ago it was a case of ’well, yup, looks like you have ME. Good luck!‘ and that was that. The only place that they could recommend for support was the Thistle foundation for a support group but that’s in Craigmillar. I was living in West Lothian at the time and couldn’t drive. So that was out. I was asked to take part in the PACE trials and I’m glad I didn’t. So many horror stories about that came out in the years following it!
Im coming out of a bad flare up just now and it’s so frustrating. Trying to find the sweet spot between doing too much which only sets me back and lying in bed feeling my life pass me by is really difficult. My heart goes out to Edina and her family. I wouldn’t wish this on my worst enemy.
And it’s exploded since covid, people getting gastrointestinal issues, palpitations, dizziness, exhausted, pins and needles, tingling. People don’t realise it can fuck up ur life.
When this illness was noticed back in the 80s it was dismissed as not being real and believed just to be something hypochondriacs claimed they had and it was nicknamed “yuppie flu” in the press.
I imagine that’s part of the reason it was almost completely ignored over the following decades and the people with it just left to suffer.
I have ME. Thanks to far too many in the medical profession, I was sceptical of its existence myself.
It’s bloody real alright, a horrible physical illness. It is in no way psychological. This is so wrong.
The disgraceful lack of knowledge and care in the NHS for sufferers is a scandal.
The fact folk are dying of this in this day and age is appalling.
9 comments
Thanks for posting this, I know someone with this and unfortunately it’s almost identical to what this poor woman went through
How we have such a condition exist so quietly with no understanding, awareness or funding blows my mind sometimes
I have ME and completely agree with her. If you’re lucky enough to have a sympathetic GP, all they can really do for you is offer pain relief and help with symptom management. It’s a shite existence which isn’t helped by years of so-called experts insisting it’s a psychological disease.
I have so much sympathy for people suffering with ME, but triply so after fallen ill with a yet-undiagnosed illness myself.
I’ve had a gamut of tests and with no resolution in sight. Following a clear CBCT scan I’m now booked in for an MRI, but it’s been suggested to me that the pain I’m experiencing daily might have a psychosomatic origin, which is fucking terrifying for me, because I know that it’s not.
This pain is very real. I struggle managing it every single day. Having somebody turn to you and telling you that the agony your suffering with might all be in your head is harrowing, but I’ve only been dealing with this for a year now, I can’t imagine what life must be like for this lady and other victims of this illness.
Thank you for sharing. It’s so misunderstood and a truly awful thing to suffer with. As with a lot of chronic illness, those with it end up having to become experts in reading medical studies etc themselves, as their doctors can be so useless. I know someone with very severe CFS/ME and she requires 24/7 care, cannot sit up or get out of bed, and still people ask why she doesn’t just get up and go outside sometimes. The only way she got her GP to follow the guidelines was by paying for an appointment with an ME specialist who passed their recommendations onto her GP, but that took years.
What medication gets prescribed for this condition?
Yikes, this was so difficult to read. I have ME too and it really is miserable at times. I’ll describe it like this. You know that way you feel before you come down with the flu? Your whole body aches, everything is an effort, you can’t think straight and you feel like you could sleep for a month? That’s how I feel when I wake up in the morning and it goes downhill from there. I can no longer work but I can feed and shower myself which I’m grateful for. Diagnosis is really just a process of elimination so you don’t actually get a definitive answer. It’s just ‘yep, we’ve ruled out everything from AIDS to dengue fever so you seem to have ME. The psychological effects are the worst, especially when you have ignorant people around you telling you it’s all in your head or you’re just being lazy or some other such nonsense.
There really isn’t much in the way of support either. When I was ‘diagnosed‘ at Edinburgh WGH almost 20 years ago it was a case of ’well, yup, looks like you have ME. Good luck!‘ and that was that. The only place that they could recommend for support was the Thistle foundation for a support group but that’s in Craigmillar. I was living in West Lothian at the time and couldn’t drive. So that was out. I was asked to take part in the PACE trials and I’m glad I didn’t. So many horror stories about that came out in the years following it!
Im coming out of a bad flare up just now and it’s so frustrating. Trying to find the sweet spot between doing too much which only sets me back and lying in bed feeling my life pass me by is really difficult. My heart goes out to Edina and her family. I wouldn’t wish this on my worst enemy.
And it’s exploded since covid, people getting gastrointestinal issues, palpitations, dizziness, exhausted, pins and needles, tingling. People don’t realise it can fuck up ur life.
When this illness was noticed back in the 80s it was dismissed as not being real and believed just to be something hypochondriacs claimed they had and it was nicknamed “yuppie flu” in the press.
I imagine that’s part of the reason it was almost completely ignored over the following decades and the people with it just left to suffer.
I have ME. Thanks to far too many in the medical profession, I was sceptical of its existence myself.
It’s bloody real alright, a horrible physical illness. It is in no way psychological. This is so wrong.
The disgraceful lack of knowledge and care in the NHS for sufferers is a scandal.
The fact folk are dying of this in this day and age is appalling.