A long shot - do we have any cardiologists who know about ME
Discussion
No, not for me. Really, really not for me. Thank god. I've just got out of hospital with something relatively straightforward and am on the way back to my 'normal'.
This girl has Myalgic Encephalomyelitis. Which may or may not be the same thing as CFS, which both may or may not be a very nasty neurological illness of not-well-understood etiology.
Please let's not have a debate about whether or not you think it's all bulls
t just now.
Someone I know who has it is very, very, very ill. Dying ill.
She needs to see a cardiologist who's knowledgable/confident about severe ME*, or willing to become so.
Here's the post from her family asking for help. There's also a link from there about the symptoms she experiences that are attributed to severe ME.
(*think not 'everything hurts and it's hard to do stuff', more 'my body isn't really supplying enough energy for talking, swallowing or sitting upright')
This girl has Myalgic Encephalomyelitis. Which may or may not be the same thing as CFS, which both may or may not be a very nasty neurological illness of not-well-understood etiology.
Please let's not have a debate about whether or not you think it's all bulls
t just now.Someone I know who has it is very, very, very ill. Dying ill.
She needs to see a cardiologist who's knowledgable/confident about severe ME*, or willing to become so.
Here's the post from her family asking for help. There's also a link from there about the symptoms she experiences that are attributed to severe ME.
(*think not 'everything hurts and it's hard to do stuff', more 'my body isn't really supplying enough energy for talking, swallowing or sitting upright')
SWH said:
Will ask a friend who's knowledgeable about such things, or at least can ask the right network of people anyway 
May take a day or two, tends to be a busy chap, or asleep!
Thankyou so much. This is a very desperate and horrible situation and it's horrible to be on the outside and really be able to do nothing useful at all except boost the signal.May take a day or two, tends to be a busy chap, or asleep!
BlackVanDyke said:
Bump, just in case.
Anybody got any other bright ideas about how to try and get this person some useful help?
Difficult. ME doesn't exist as an illness in its own right, and there are certainly no links with cardiac illness since there's no pathological mechanism of illness. I suggest just taking ME out of the equation and just seeing a good cardiologist. The theoretical mechanism behind the possible cardiomyopathy, is irrelevant. She will be treated for her symptoms and signs, not a theoretical illness that might cause it.Anybody got any other bright ideas about how to try and get this person some useful help?
968 said:
BlackVanDyke said:
Bump, just in case.
Anybody got any other bright ideas about how to try and get this person some useful help?
Difficult. ME doesn't exist as an illness in its own right, and there are certainly no links with cardiac illness since there's no pathological mechanism of illness. I suggest just taking ME out of the equation and just seeing a good cardiologist. The theoretical mechanism behind the possible cardiomyopathy, is irrelevant. She will be treated for her symptoms and signs, not a theoretical illness that might cause it.Anybody got any other bright ideas about how to try and get this person some useful help?
I'm aware of contact you've had with some particularly 'extreme' ME patients - have you ever run into any like Jenny (this case), Lynn Gilderdale etc? What do you reckon's going on with such cases?
I think the need for an ME-aware cardiologist will be around not exacerbating the other problems she has, mostly - it's not entirely clear what catastrophic event happens if she is e.g. bed-bathed more regularly than 4 weekly (yuk!) but it must be a fairly major issue to have ended up being the best/only way to maintain her.
I was pootling around the new bits of the MRI t'other day (just been sprung after a nasty brush with an infection) and thought of you - are you down South now? It's all very shiny and nobody knows how to obtain various bits of safety-critical equipment like bedrail bumpers for a patient with epilepsy. Bit disturbing. It felt a lot safer when it was more ramshackle and crumbly and involved less customer satisfaction surveys.
Hi, Tim2100's girlfriend here. Long time M.E. sufferer.
Yes, there is at least one cardiologist in the country who is familiar with M.E. and the affects it can have on the heart. I do not personally know who it is, but a friend of mine is under their care. If you go to Facebook and join this group: https://www.facebook.com/groups/251249508448/, talk to Dee Jay and she will tell you all about it.
My personal experience is that it does affect my heart, but not consistently enough to warrant seeing a cardiologist. I suffer badly with Orthostatic Intolerance, and my heart frequently struggles to keep going when I am at rest. If she has severe problems then I do highly recommend she contacts Dee's cardiologist, as Dee seems to be making progress.
For the information of a previous poster, M.E. is an internationally recognised neurological condition. As a doctor you should now be using the International Consensus Criteria to diagnose the condition. For a short version of this you can visit the M.E. Association's website. Both NICE and the WHO recognise M.E. to exist, the Norwegian government has even proffered an apology to all M.E. sufferers in the country following studies performed over the last few years. It is everso tiresome to still hear doctor's in this country refusing to acknowledge what is clearly a serious problem.
Yes, there is at least one cardiologist in the country who is familiar with M.E. and the affects it can have on the heart. I do not personally know who it is, but a friend of mine is under their care. If you go to Facebook and join this group: https://www.facebook.com/groups/251249508448/, talk to Dee Jay and she will tell you all about it.
My personal experience is that it does affect my heart, but not consistently enough to warrant seeing a cardiologist. I suffer badly with Orthostatic Intolerance, and my heart frequently struggles to keep going when I am at rest. If she has severe problems then I do highly recommend she contacts Dee's cardiologist, as Dee seems to be making progress.
For the information of a previous poster, M.E. is an internationally recognised neurological condition. As a doctor you should now be using the International Consensus Criteria to diagnose the condition. For a short version of this you can visit the M.E. Association's website. Both NICE and the WHO recognise M.E. to exist, the Norwegian government has even proffered an apology to all M.E. sufferers in the country following studies performed over the last few years. It is everso tiresome to still hear doctor's in this country refusing to acknowledge what is clearly a serious problem.
Cheers, Tim's Girlfriend, that's really helpful. Have sent her a facebook message - I don't join groups etc on there any more as it's just too hard/frustrating to use. Hopefully she'll be able to pass details on to the family - I've given her the contact info directly so that it doesn't have to come back through me.
I feel reasonably confident saying that a) not everyone with a diagnosis of ME has the same physiological condition and b) some people with a diagnosis of ME do not have a condition of physiological origin at all. This is emphatically not a judgement on any one individual or the collective suffering of the community - I've seen it up close - just a straightforward observation of the diversity within it. The lack of access to good quality support (yes, including psychiatric and psychological support) at whichever level it's needed makes things vastly worse for everybody, whatever the origin/cause of their symptoms.
I feel reasonably confident saying that a) not everyone with a diagnosis of ME has the same physiological condition and b) some people with a diagnosis of ME do not have a condition of physiological origin at all. This is emphatically not a judgement on any one individual or the collective suffering of the community - I've seen it up close - just a straightforward observation of the diversity within it. The lack of access to good quality support (yes, including psychiatric and psychological support) at whichever level it's needed makes things vastly worse for everybody, whatever the origin/cause of their symptoms.
Yes, unfortunately it is true that a lot of people are incorrectly diagnosed with M.E.. This of course makes it extremely difficult for studies, as sample groups may not even be containing people with the illness they're trying to study. I've known people to be diagnosed with M.E. only to find that they were actually struggling with hypothyroidism, gluten intolerance, diabetes, fibromyalgia, adrenal fatigue, and in my sisters case MS. She was diagnosed with M.E. at the same time that I became ill, only to be diagnosed eight years later with RRMS. She is the first to admit that I am more ill than she is, though obviously I wish she was not ill at all.
Some doctors find it an easy and convenient umbrella with which to lable any fatigue problem, without doing the necessary elimintation tests. Yet other doctors refuse to believe it exists at all. My previous doctor (sadly I had to leave his care when I moved area) had been of the latter opinion; that M.E. does not exist when I became his patient. I was his first M.E. patient. Everything he had read regarding M.E. lead him to believe that patients were neurotic, making themselves sicker and sicker with their neuroses over illness, wanting to be ill, to not work, and to have a general pity party. So when I continually badgered him for test after test after test, seeking an alternative diagnosis he was very confused. It didn't fit his conception. He was (and is) an amazing doctor, now taking M.E. far more seriously.
I've nearly died from this condition. I've been bedbound for months on end, virtually housebound for the last ten years. Many people think that people with M.E. are scroungers, we simply want the handouts from the government and to live an easy life. Well, firstly I'm not claiming benefits. But if I was I'd be in receipt of £90 (ish) a week. That is approximately £5000 a year. When I became ill I was earning £15,000, by now I'd be on a much higher salary; there is no way I would have given up a job I loved for such a huge pay cut. It's far from the life of riley either, but I won't bore you with what my daily struggle is like.
I'd be quite happy to discuss M.E. further with anyone who is interested, but I'd prefer to not do so through Tim2100's account. So if you'd like to discuss it further please PM him for my email address
Some doctors find it an easy and convenient umbrella with which to lable any fatigue problem, without doing the necessary elimintation tests. Yet other doctors refuse to believe it exists at all. My previous doctor (sadly I had to leave his care when I moved area) had been of the latter opinion; that M.E. does not exist when I became his patient. I was his first M.E. patient. Everything he had read regarding M.E. lead him to believe that patients were neurotic, making themselves sicker and sicker with their neuroses over illness, wanting to be ill, to not work, and to have a general pity party. So when I continually badgered him for test after test after test, seeking an alternative diagnosis he was very confused. It didn't fit his conception. He was (and is) an amazing doctor, now taking M.E. far more seriously.
I've nearly died from this condition. I've been bedbound for months on end, virtually housebound for the last ten years. Many people think that people with M.E. are scroungers, we simply want the handouts from the government and to live an easy life. Well, firstly I'm not claiming benefits. But if I was I'd be in receipt of £90 (ish) a week. That is approximately £5000 a year. When I became ill I was earning £15,000, by now I'd be on a much higher salary; there is no way I would have given up a job I loved for such a huge pay cut. It's far from the life of riley either, but I won't bore you with what my daily struggle is like.
I'd be quite happy to discuss M.E. further with anyone who is interested, but I'd prefer to not do so through Tim2100's account. So if you'd like to discuss it further please PM him for my email address
OP, please email me and I will put you in touch with my Wife.
She was diagnosed with ME/CFS some time ago and it was a real rollercoaster.
We were lucky enough to be able to see a guy at Oxford Hospital who is one of the worlds leading ME specialists, I cannot remember his name for the life of me now, but we will dig it out and pass on what info we can.
She was diagnosed with ME/CFS some time ago and it was a real rollercoaster.
We were lucky enough to be able to see a guy at Oxford Hospital who is one of the worlds leading ME specialists, I cannot remember his name for the life of me now, but we will dig it out and pass on what info we can.
tim2100 said:
Hi, Tim2100's girlfriend here. Long time M.E. sufferer.
Yes, there is at least one cardiologist in the country who is familiar with M.E. and the affects it can have on the heart. I do not personally know who it is, but a friend of mine is under their care. If you go to Facebook and join this group: https://www.facebook.com/groups/251249508448/, talk to Dee Jay and she will tell you all about it.
My personal experience is that it does affect my heart, but not consistently enough to warrant seeing a cardiologist. I suffer badly with Orthostatic Intolerance, and my heart frequently struggles to keep going when I am at rest. If she has severe problems then I do highly recommend she contacts Dee's cardiologist, as Dee seems to be making progress.
For the information of a previous poster, M.E. is an internationally recognised neurological condition. As a doctor you should now be using the International Consensus Criteria to diagnose the condition. For a short version of this you can visit the M.E. Association's website. Both NICE and the WHO recognise M.E. to exist, the Norwegian government has even proffered an apology to all M.E. sufferers in the country following studies performed over the last few years. It is everso tiresome to still hear doctor's in this country refusing to acknowledge what is clearly a serious problem.
Thank you for your information but I worked at the national centre for CFS some years ago as a neurologist. There is no pathological basis behind this disease in the vast majority of patients diagnosed with it.Yes, there is at least one cardiologist in the country who is familiar with M.E. and the affects it can have on the heart. I do not personally know who it is, but a friend of mine is under their care. If you go to Facebook and join this group: https://www.facebook.com/groups/251249508448/, talk to Dee Jay and she will tell you all about it.
My personal experience is that it does affect my heart, but not consistently enough to warrant seeing a cardiologist. I suffer badly with Orthostatic Intolerance, and my heart frequently struggles to keep going when I am at rest. If she has severe problems then I do highly recommend she contacts Dee's cardiologist, as Dee seems to be making progress.
For the information of a previous poster, M.E. is an internationally recognised neurological condition. As a doctor you should now be using the International Consensus Criteria to diagnose the condition. For a short version of this you can visit the M.E. Association's website. Both NICE and the WHO recognise M.E. to exist, the Norwegian government has even proffered an apology to all M.E. sufferers in the country following studies performed over the last few years. It is everso tiresome to still hear doctor's in this country refusing to acknowledge what is clearly a serious problem.
NICE recognises the only therapeutic option to be cognitive behavioural therapy with graded exercise, as this is in the main a psychological condition mislabelled. There are (some) patients with a definable viral illness confirmable by serology, who then develop a myalgia, however many of the patients diagnosed remain so with no empirical evidence of a pathological mechanism.
Its simply untrue that most people with m.e have no physical base to their disease. I understand your ignorance but I think its sad, because what youre saying is completely untrue. Lots of doctors dont do the right tests, but those that do find a huge amount of anomalies in the bodies of m.e sufferers. It is a multi-systemic disease and its truly tragic to see people suffering so much and even more so that science at this moment,can do little or nothing to help them. The only advice I can give to this poor person who is dying ill, is rest. that may seem obvious-if she cant even swallow or sit she will be unable to do anything, but no unneccesary noise or light, a really quiet enviroment may help....its such a vicious and violent disease and its so terrible. but even people with the severest kind of m.e can improve. tell her to hang on!
Seraphina24 said:
Its simply untrue that most people with m.e have no physical base to their disease. I understand your ignorance but I think its sad, because what youre saying is completely untrue. Lots of doctors dont do the right tests, but those that do find a huge amount of anomalies in the bodies of m.e sufferers. It is a multi-systemic disease and its truly tragic to see people suffering so much and even more so that science at this moment,can do little or nothing to help them. The only advice I can give to this poor person who is dying ill, is rest. that may seem obvious-if she cant even swallow or sit she will be unable to do anything, but no unneccesary noise or light, a really quiet enviroment may help....its such a vicious and violent disease and its so terrible. but even people with the severest kind of m.e can improve. tell her to hang on!
Forgive my ignorance, but please tell me which tests show evidence of ME? I'd be fascinated to know. After more than 6 months working at the national centre for CFS, the patients underwent nearly every possible neurological test (apart from a lumbar puncture - because its not nice) and none of them ever showed any physical abnormality. I'd also like to know how many patients you've seen and treated with CFS or ME? It might allow me to reconsider my ignorance. 968 said:
Thank you for your information but I worked at the national centre for CFS some years ago as a neurologist. There is no pathological basis behind this disease in the vast majority of patients diagnosed with it.
NICE recognises the only therapeutic option to be cognitive behavioural therapy with graded exercise, as this is in the main a psychological condition mislabelled. There are (some) patients with a definable viral illness confirmable by serology, who then develop a myalgia, however many of the patients diagnosed remain so with no empirical evidence of a pathological mechanism.
Interesting.NICE recognises the only therapeutic option to be cognitive behavioural therapy with graded exercise, as this is in the main a psychological condition mislabelled. There are (some) patients with a definable viral illness confirmable by serology, who then develop a myalgia, however many of the patients diagnosed remain so with no empirical evidence of a pathological mechanism.
I worked with a woman who'd had six months off work with 'M.E', who was certainly not a ligger or a scrounger. This was in a Top 10 London advertising agency, where the rewards are certainly there, but life is tough.
She said she'd seen a specialist privately, who'd explained that the etiological agent thought responsible for M.E. affects mitochondria in cardiac muscle. Dusting off 'A' Level Biology, this sounded plausible to me, given the symptoms.
However she took a cocktail of drugs in order to 'keep with it'. One of which I couldn't help noticing was Prozac...
A big part of the problem is how little gravity is given to physical problems of psychological origin - conversion disorder is the one I'm thinking of but I'm fairly sure there are more - the stigma associated with such things is huge and carrying that label pretty much guarantees that the person will get no practical help or support whatsoever, regardless of the fact that it's no less genuinely needed (along of course with good quality psychological/psychiatric care, also not easy to come by in this country unless you're desperately, life-threateningly mentally ill) just because the origin of the problem lies in brain chemistry.
Getting better at diagnosing and differentiating all the different things that currently attract the label of ME or CFS would help a lot, but only in conjunction with a way to properly look after people once they've been accurately diagnosed! That will need to include the people who do turn out to have symptoms of psychy origin (and there are plenty of those, I still believe probably the majority with this diagnosis), and dealing with the fear of that label is going to be a very, very big part of it.
The person I'm trying to help find help (IYSWIM) remains desperately ill, but relatively chirpy. Thanks to everyone who's suggested ideas - no joy yet, but I agree strongly with the suggestion that finding a cardiologist who'll take her as she is and deal with problems as they present, rather than one who's already an expert (in this rather murky umbrella of at least 3 or 4 different conditions) will be her best bet. Easier said than done, I fear.
Getting better at diagnosing and differentiating all the different things that currently attract the label of ME or CFS would help a lot, but only in conjunction with a way to properly look after people once they've been accurately diagnosed! That will need to include the people who do turn out to have symptoms of psychy origin (and there are plenty of those, I still believe probably the majority with this diagnosis), and dealing with the fear of that label is going to be a very, very big part of it.
The person I'm trying to help find help (IYSWIM) remains desperately ill, but relatively chirpy. Thanks to everyone who's suggested ideas - no joy yet, but I agree strongly with the suggestion that finding a cardiologist who'll take her as she is and deal with problems as they present, rather than one who's already an expert (in this rather murky umbrella of at least 3 or 4 different conditions) will be her best bet. Easier said than done, I fear.
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