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Thoughts on M.E.
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This film got me thinking - not sure I would be able to remain positive being confined to bed for years on end (for some reason it seems worse when they are her teenage years being spent this way). I imagine it must also hurt knowing that people trivialise your condition by calling it things like yuppie flu, even chronic fatigue syndrome doesn't seem to do it justice as people tend to over look the seriousness on hearing it referred to that way.
What's your take on the condition?
How did it end up being called things like yuppie flu and do you think this trivialisation discourages research that could find a cure? Media URL: http://youtu.be/VH-puNCQxh4
Description:
What's your take on the condition?
How did it end up being called things like yuppie flu and do you think this trivialisation discourages research that could find a cure? Media URL: http://youtu.be/VH-puNCQxh4
Description:
Answers
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In centuries past people were simply identified as being invalids, or described as 'fading away'....now that most illnesses are diagnosed, weighed, measured and treated we seem to need labels that are more exact.....it's hurtful and very mean to call an obvious illness yuppie flu but it originates in richer people being able to persuade their doctors to take them seriously rather than dosing them with tranquilisers and telling them to get a grip.
One of my roles is as the administrative lead for a chronic fatigue service for adolescents. I think chronic fatigue is a good name for ME, and it covers a wide range of symptoms/problems such as abdominal pain, vomiting, constipation, hypermobility etc... I'm not clinical, but my understanding is that there are virus's that can knock children down for a while and they can take a bit of recovery from, like glandular fever. However, I would happily say that most of the cases we have (we tend to get the really complex ones) have an extremely large psychological element; which is not to say that they don't feel the symptoms they describe, they clearly do but the brain is incredibly powerful. Also, some of the parents are not helpful, either more anxious than the patients or completely not engaged, however we can at least work with the anxious ones, but the anxiety or lack of engagement transfers to the kids too and that's 'challenging' (for want of a better word). Lack of engagement can actually lead down the child safeguarding route.
In terms of treatment, the multi-disciplinary team uses physiotherapy, occupational therapy, rehabilitating admissions for a week, group sessions and psychology/psychotherapy as well as throughly investigating medical symptoms appropirately as the family and patient have to be assured that nothing serious is going on anywhere else and that the medical team is really listening to them.
Overall, I think it's a sad thing to effect young people who should be enjoying their teenage years (as much as it's possible to enjoy being a teenager). One thing I haven't mentioned is how high achieving most of the patients on my book are/were; we have patients who have been incredibly sporty and at the top of their games previously, dancers, musicians and extremely academic patients who have had been anticipated to get A* in their exams. Mainly I believe in the work the team do, in that we can help with the illness as a whole as it effects you but it needs a robust psychological/psychotherapy input as well, it's important not to medicalise everything. We have a good success rate.
I do however wonder about third world countries/poor countries and it has occured to me that is chronic fatigue syndrome an illness of the western world? I haven't actually asked any of the team yet but I'm interested to pick some brains. I might do that next week actually :c)
In terms of treatment, the multi-disciplinary team uses physiotherapy, occupational therapy, rehabilitating admissions for a week, group sessions and psychology/psychotherapy as well as throughly investigating medical symptoms appropirately as the family and patient have to be assured that nothing serious is going on anywhere else and that the medical team is really listening to them.
Overall, I think it's a sad thing to effect young people who should be enjoying their teenage years (as much as it's possible to enjoy being a teenager). One thing I haven't mentioned is how high achieving most of the patients on my book are/were; we have patients who have been incredibly sporty and at the top of their games previously, dancers, musicians and extremely academic patients who have had been anticipated to get A* in their exams. Mainly I believe in the work the team do, in that we can help with the illness as a whole as it effects you but it needs a robust psychological/psychotherapy input as well, it's important not to medicalise everything. We have a good success rate.
I do however wonder about third world countries/poor countries and it has occured to me that is chronic fatigue syndrome an illness of the western world? I haven't actually asked any of the team yet but I'm interested to pick some brains. I might do that next week actually :c)
China, that's really interesting. There was a girl in my class at school who was diagnosed at age 11, she missed so much school but got fantastic exam results and did so well at uni! She's 25 now and still has ME apparently, she has a very low immune system. I've never heard of anyone else having ME for so many years.
I've had it mentioned a few times over the years in connection with arthritis and fibromyalgia and having hypermobile joints, Vit D deficiency and absorption problems etc..., especially after serious illnesses like viral pnumonia & meningitis which knocked me for six and more recently having tests for Lupus and immune disorders so have a fair amount of empathy. I also have a relative who suffered badly from ME when she was younger.
It's a really difficult thing to try and explain to people, the chronic fatigue aspects of conditions, especially "invisible" ones and when you're young and people assume things.
I used to be incredibly active, always out and about doing things, studying hard, working and doing voluntary and charity work and all sorts of hobbies.
It's means some quite harsh decisions which don't always sit easy with people priority wise. I live alone and look after and find myself so work is key for me to be able to afford to live - when things are bad that means everything else takes a back seat, seeing friends, cleaning, anything which takes energy away from where I need it, keeping holidays back for resting, same with most weekends. I also function better in a pretty strict routine.
My life has changed dramatically from a pretty high powered job and busy lifestyle but you have to adapt so you do and find other easier things to do and learn to conserve energy and plan ahead as much as possible.
It can be really frustrating (and stressful) but then sometimes you are so exhausted you can't do anything but rest as there isn't much room for anything else in you. At least I have managed to do a lot in the past (and hope to again!), I really feel for younguns who haven't had the chance to do that, especially those confined indoors and to bed.
I think a multiteam approach is great as there is more understanding so you don't feel so on your own, especially as it's quite a lonely thing, and there are so many different ways to target things, medicine, occupational therapy, physio, relaxation etc...
I think things like support groups would be great. I've found a local one but wasn't well enough to get to the last one (typical!) but the internet is an amazing tool for that.
It's a really difficult thing to try and explain to people, the chronic fatigue aspects of conditions, especially "invisible" ones and when you're young and people assume things.
I used to be incredibly active, always out and about doing things, studying hard, working and doing voluntary and charity work and all sorts of hobbies.
It's means some quite harsh decisions which don't always sit easy with people priority wise. I live alone and look after and find myself so work is key for me to be able to afford to live - when things are bad that means everything else takes a back seat, seeing friends, cleaning, anything which takes energy away from where I need it, keeping holidays back for resting, same with most weekends. I also function better in a pretty strict routine.
My life has changed dramatically from a pretty high powered job and busy lifestyle but you have to adapt so you do and find other easier things to do and learn to conserve energy and plan ahead as much as possible.
It can be really frustrating (and stressful) but then sometimes you are so exhausted you can't do anything but rest as there isn't much room for anything else in you. At least I have managed to do a lot in the past (and hope to again!), I really feel for younguns who haven't had the chance to do that, especially those confined indoors and to bed.
I think a multiteam approach is great as there is more understanding so you don't feel so on your own, especially as it's quite a lonely thing, and there are so many different ways to target things, medicine, occupational therapy, physio, relaxation etc...
I think things like support groups would be great. I've found a local one but wasn't well enough to get to the last one (typical!) but the internet is an amazing tool for that.
Indeed Dave, good when information can be got out there :)
It's a difficult thing to understand if you haven't experienced it. I'm benefitted greatly from a multi team approach and although I already had adapted quite a way and had some good coping strategies there are always things you don't think of. I've had some fantastic advice recently from my rhumo nurse, physio and OT, things I use now a lot.
I find talking about things does help, helps people understand more. People may see me as a bit dull as I rarely go out with friends anymore in the evenings and I don't have much to talk about as I'm out of the loop and I don't have the energy to make much of an effort day to day and stick to the same places but it's not by choice. It makes me feel bad and I'd love to be going out and seeing people and making myself look nice again and not worry about putting on weight with being less mobile and with certain meds etc... I worry about whether I have a chance at meeting someone and if I do will the medical stuff screw it up, will I be able to have a family, have to scale down my job/hours again... all sorts.
I am worried about anyone coming to my house as I can't keep up with cleaning and although it's not bad I would feel uncomfortable unless I could have it all clean and nice. I could do with moving somewhere cheaper and smaller so more manageable, maybe get some cleaning help if I can save rent but then I don't have the energy to think about starting that whole process, let alone actually moving, and with things as they are I don't know if I'd feel secure enough to start a new tenancy, it's a bit of a vicious circle.
I find it quite stressful getting invites at the moment even though it's lovely to still be invited, it's a weird thing but it stresses me out as I often want to go but then stress I won't be able to cope with it or if I go I'll pay for it after etc... then it's stressful cancelling and I feel bad but then I'd feel worse if I went...
Often I'm so exhausted and just trying to focus on resting or keeping going I'm not so self conscious or bothered but stress can be a major factor I don't think many people associate with conditions which cause serious fatigue.
It's a difficult thing to understand if you haven't experienced it. I'm benefitted greatly from a multi team approach and although I already had adapted quite a way and had some good coping strategies there are always things you don't think of. I've had some fantastic advice recently from my rhumo nurse, physio and OT, things I use now a lot.
I find talking about things does help, helps people understand more. People may see me as a bit dull as I rarely go out with friends anymore in the evenings and I don't have much to talk about as I'm out of the loop and I don't have the energy to make much of an effort day to day and stick to the same places but it's not by choice. It makes me feel bad and I'd love to be going out and seeing people and making myself look nice again and not worry about putting on weight with being less mobile and with certain meds etc... I worry about whether I have a chance at meeting someone and if I do will the medical stuff screw it up, will I be able to have a family, have to scale down my job/hours again... all sorts.
I am worried about anyone coming to my house as I can't keep up with cleaning and although it's not bad I would feel uncomfortable unless I could have it all clean and nice. I could do with moving somewhere cheaper and smaller so more manageable, maybe get some cleaning help if I can save rent but then I don't have the energy to think about starting that whole process, let alone actually moving, and with things as they are I don't know if I'd feel secure enough to start a new tenancy, it's a bit of a vicious circle.
I find it quite stressful getting invites at the moment even though it's lovely to still be invited, it's a weird thing but it stresses me out as I often want to go but then stress I won't be able to cope with it or if I go I'll pay for it after etc... then it's stressful cancelling and I feel bad but then I'd feel worse if I went...
Often I'm so exhausted and just trying to focus on resting or keeping going I'm not so self conscious or bothered but stress can be a major factor I don't think many people associate with conditions which cause serious fatigue.
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