Nobody is really listening to ME/CFS patients
Over the past four weeks I have, for the first time in four years, been almost free of pain but only if I continue to lay quietly 23 hours a day. This I believe is because for the first time in five years, I have managed to live within my baseline.
Installing a great dishwasher has made a huge difference. I would rate it, along with a washing machine, as the number one appliance for anyone who is chronically ill.
Also, I have stopped having daily cooks who were more trouble than they were worth causing me a lot of work and distress.
Over the past month, I have continued to be very strict about maintaining a healthy diet while not getting too involved with food anymore. A friend now very kindly shops for me and brings 2-4 weeks worth of ready-made meals from a special wholefood store that specialises in organic produce. The meals are substantial, can be easily stored in the freezer, and after defrosting can be heated in the oven on a tinfoil covered tray for 40 minutes. More on this at a later date.
Although I am still horizontal 23 hours a day, I feel I have gained 30 minutes more energy a day to use on activities like speaking on the phone, conversing with visitors more frequently, handwriting cards and organising one item to cross off my "things to do" list each day.
My ongoing project at the moment - over the past four weeks - is selecting and organising the installation of a new gas fire heater. Much biggger project than I anticipated. More on this at a later date. Just wanted to explain why I am not suffering so badly that I feel as though I am dying. Of course being in less pain spills over into the way I look, my eyes and demenour, my breathing, the sound of my voice, my attitude - all in all it must be a lot easier going for visitors or callers on the phone, which in turn makes everything seem more upbeat, normal and cheerful.
Of course I have tested it - and pushed myself to walk further around the house each day - but whenever I start going outside of my baseline (ie 15 minutes is my ceiling on mental or physical activity such as talking, walking, standing, -- for instance spending 15 minutes in the kitched trying to rustle up something and make a salad) if I go beyond ten minutes a day it ruins the whole day and maybe the next few days if I don't watch things very carefully.
Three weeks is the longest I have had feeling this way. It happened once, in January 2004. But did not last. I am determined this time not to overdo it. I am extremely curious to find out if something will be healing when I rest while not in pain - or whether I am simply learning and have all the props in place to manage to live within my baseline.
I wrote the following post on January 19, when I was feeling particularly poorly and going through a hard time and filed it in my drafts folder to look at later on.
This item was posted 2nd November 2004 at the website of the M.E. Association, UK. The title caught my eye as for me it just about sums up one of the worst aspects of this illness - and confirms, once again, that in the five years I have been struck down with M.E., not a lot has changed in the outside world when it comes to perceptions and understanding of this condition. Contrary to what my friends and family believe, there is no treatment or cure. For some reason, people just can't get their heads round the fact that nothing can be done to help. I am going through a particularly difficult time lately as it seems clear to me that my family and friends are giving up on trying to help me because I can't be helped (my words) and I do not appear to be helping myself and always say "no thank you" to whatever they suggest. Their suggestions range from wearing magnets to being excorcised, taking aromotherapy (strong scents make me feel more ill) and reflexology (made me hyper and worse). They want me to see doctors, consultants, specialists or go to hospital for treatments that they believe exists. You have to do everything you can, trying anything to get well, they say. If there are no treatments: what's the point? why put me through it when it could risk making me worse? I would rather use the energy on visiting people.
Someone else I know thinks I am ill because of my domineering mother and that it is within my gift to get well, if I wanted to - and that when I am ready to move forward, I will get well. A few other people are disappointed in me because I won't go as an inpatient in hospital and leave Ophelia: what for? there is no treatment -- and Ophelia is all I have, she would be a different cat when I return - we have been together 24/7 for 3 years, she was cruelly treated as a kitten and now is a confident cat around me. When visitors arrive here she acts timid and withdrawn. As soon as they leave, she swaggers around like queen of the castle. I can't imagine anyone else having the time and love for Ophelia, that I give. She gets a cuddle every few hours, is let out half a dozen times a day, and gets treats and playtime twice a day - we have a routine that works like clockwork. We go to sleep and awake at the same time. She knows where her bed and food and emergency tray is (she never uses it because she is in and out all day). If I am not on the couch, she comes looking for me. And she comes into my bedroom at the crack of dawn to wake me up. She has several different places to sleep and hidey holes when she hears fireworks. I have never left her alone. I cannot imagine her in the pen of a cattery. She would cry and get confused and distressed - and so would I.
What I am saying is people don't seem able to accept that some things just have to be the way they are. There is not always a fix. And chasing rainbows can be a waste, and risky. Everyone has their own way of coping. For me, at this point in time, it feels better to try the only thing that has been proven to work: complete rest for as long as it takes.
I am still not at the stage of being able to have six weeks consecutive rest. Something always crops up. So I am being proactive now, and getting certain household tasks and maintenance taken care of within the space of weeks and months, to make way for the rest regime I am planning for Spring.
By Summer I expect to be able to lay on the balcony in the sun - and to take a walk down to the beach. I cannot recall when I last did those two things. Certainly I have had no sun on my body for two years. The last time I walked 50 yards to the beach - and 50 yards back was probably about four years ago.
If by this time next year none of it has worked, I shall have re-think and maybe even save the money to have a private specialist come visit me. I will listen to what they have to say because by then I will have tried everything that is within my power to try. Getting household and food organised has been the biggest hurdle that has taken four years to overcome. My extra new food freezer and dishwasher have made a huge difference.
Unless unusual new symptoms flare up, I don't see any point in wasting energy and life bothering the doctor or spending months and years experimenting with pills, potions and anti depressants. Who knows what they do to the body. The ME patients I've spoken to who are severely affected affected for more than 10 years have tried all of the things I have mentioned, none of them have recovered at all. Their lives, what was left of them, have been sucked out of them by regular doctors appointments, visiting specialists, acupuncturaists, herablists and trials with all sorts of other things. One sufferer told me a big thing 15 years ago everyone tried was taking freezing cold baths. In the olden days there were experiments with polio patients, putting boiled wool on the backs of their legs to get them to move their muscles - the wool was so hot it blistered their skin. Of course, it didn't work.
Having said all of that, if a whole team of doctors, nurses and specialists turned up here, I would not object to a single thing and would go along with everything they say. The thing is what I cannot do, is organise all of that for myself. It is just too physically and mentally demanding to organise. No matter how hard I'd - and I have had a reputation for moving mountains - I cannot manage it all by myself. I cannot organise my own healthcare - if I could, I would not be so ill or need looking after. People just don't seem able to grasp that it takes everything I have just to manage the basics of each day - just getting through the day and keeping clean, fed and watered - along with Ophelia and a few plants. Something like Christmas, is too much to fit in on top of getting through the day, which is why I experimented with letting Christmas pass me by this year. I did not start ordering cards and gifts in summer, or start writing/wrapping in September to get them ready/posted by Dec 6. It was too depressing though. I shan't be doing that again. If it sets me back til Feb, so be it.
- - -
An editorial written by Dr Peter White entitled 'What causes chronic fatigue syndrome?' appeared in the British Medical Journal on 23 October. Dr Charles Shepherd, medical adviser to The ME Association, has submitted the following MEA response to the BMJ, asking it to be considered for publication:
Earlier this year The ME Association organised a petition calling for urgent government-funded research into the physical causes of ME/CFS. Over 28,000 people signed the petition, which was later presented to the Prime Minister. The front cover of our current magazine depicts volunteers climbing up Ben Nevis to raise money for ME/CFS research. Such is the frustration of people with ME/CFS who do not believe that their views are being listened to by the medical establishment.
So an editorial in the British Medical Journal (1) reviewing the possible causes of ME/CFS should be good news. But is it?
Whilst many doctors support the idea of a disease model involving predisposing, precipitating and perpetuating factors, Peter White's editorial provides a highly selective review of the evidence so far. Crucially, it fails to offer any innovative suggestions as to how this model could be used to gain a better understanding of the underlying physical causes of ME/CFS and so develop more effective forms of treatments. Instead, all that is offered are two very familiar solutions: cognitive behaviour therapy (CBT) and graded exercise therapy (GET). And although these approaches may provide some benefit to some people with chronic fatigue, they are of no value at all, or may even be counter-productive, to others who come under the umbrella of ME/CFS.
The medical profession has only itself to blame for the awful mess that currently surrounds ME/CFS. It has created an illness that covers a wide variety of fatigue state clinical presentations, with or without psychiatric co-morbidity, and almost certainly an equally diverse range of possible pathological and physiological explanations. Doctors who deal with patients suffering from unexplained abdominal pain, arthralgia or headaches do not work on the basis that they all have the same pathoaetiology and will therefore respond to the same form of treatment. So why apply this form of flawed logic to ME/CFS?
And it should come as no surprise to find patients expressing deep frustration when they are told that while over £4 million is currently being spent on government-funded research into ME/CFS, this is all going on yet more studies into behavioural interventions, with nothing whatsoever going to underlying causation. There are numerous areas of research that could and should be pursued: in particular the need to look at mechanisms involved in the production of debilitating fatigue in conditions such as multiple sclerosis, primary biliary cirrhosis and ME/CFS, where it cannot simply be explained as being due to deconditioning.
What we need is thought-provoking research which doesn't take the simplistic view that ME/CFS essentially comprises of abnormal illness beliefs, abnormal illness behaviour, and the consequences of inactivity. The World Health Organisation now classifies both ME and CFS as neurological disorders in section G93.3 of their International Classification of Diseases (ICD10). The UK government agrees with this classification. So let's have a look at the neurology of ME/CFS for a change - instead of pouring yet more money into the bottomless pit of psychology.
Reference
1 White P. What causes chronic fatigue syndrome? BMJ 2004; 329: 928 - 929 (23 October).
Dr Charles Shepherd, Medical Adviser, ME Association, 4 Top Angel, Buckingham MK18 1TH, England, UK.
Conflict of interest: Physician whose ME was precipitated by chickenpox encephalitis and who used to be very physically active as a child as well as prior to developing this illness.
http://www.meassociation.org.uk/fwhats_new.htm
Installing a great dishwasher has made a huge difference. I would rate it, along with a washing machine, as the number one appliance for anyone who is chronically ill.
Also, I have stopped having daily cooks who were more trouble than they were worth causing me a lot of work and distress.
Over the past month, I have continued to be very strict about maintaining a healthy diet while not getting too involved with food anymore. A friend now very kindly shops for me and brings 2-4 weeks worth of ready-made meals from a special wholefood store that specialises in organic produce. The meals are substantial, can be easily stored in the freezer, and after defrosting can be heated in the oven on a tinfoil covered tray for 40 minutes. More on this at a later date.
Although I am still horizontal 23 hours a day, I feel I have gained 30 minutes more energy a day to use on activities like speaking on the phone, conversing with visitors more frequently, handwriting cards and organising one item to cross off my "things to do" list each day.
My ongoing project at the moment - over the past four weeks - is selecting and organising the installation of a new gas fire heater. Much biggger project than I anticipated. More on this at a later date. Just wanted to explain why I am not suffering so badly that I feel as though I am dying. Of course being in less pain spills over into the way I look, my eyes and demenour, my breathing, the sound of my voice, my attitude - all in all it must be a lot easier going for visitors or callers on the phone, which in turn makes everything seem more upbeat, normal and cheerful.
Of course I have tested it - and pushed myself to walk further around the house each day - but whenever I start going outside of my baseline (ie 15 minutes is my ceiling on mental or physical activity such as talking, walking, standing, -- for instance spending 15 minutes in the kitched trying to rustle up something and make a salad) if I go beyond ten minutes a day it ruins the whole day and maybe the next few days if I don't watch things very carefully.
Three weeks is the longest I have had feeling this way. It happened once, in January 2004. But did not last. I am determined this time not to overdo it. I am extremely curious to find out if something will be healing when I rest while not in pain - or whether I am simply learning and have all the props in place to manage to live within my baseline.
I wrote the following post on January 19, when I was feeling particularly poorly and going through a hard time and filed it in my drafts folder to look at later on.
This item was posted 2nd November 2004 at the website of the M.E. Association, UK. The title caught my eye as for me it just about sums up one of the worst aspects of this illness - and confirms, once again, that in the five years I have been struck down with M.E., not a lot has changed in the outside world when it comes to perceptions and understanding of this condition. Contrary to what my friends and family believe, there is no treatment or cure. For some reason, people just can't get their heads round the fact that nothing can be done to help. I am going through a particularly difficult time lately as it seems clear to me that my family and friends are giving up on trying to help me because I can't be helped (my words) and I do not appear to be helping myself and always say "no thank you" to whatever they suggest. Their suggestions range from wearing magnets to being excorcised, taking aromotherapy (strong scents make me feel more ill) and reflexology (made me hyper and worse). They want me to see doctors, consultants, specialists or go to hospital for treatments that they believe exists. You have to do everything you can, trying anything to get well, they say. If there are no treatments: what's the point? why put me through it when it could risk making me worse? I would rather use the energy on visiting people.
Someone else I know thinks I am ill because of my domineering mother and that it is within my gift to get well, if I wanted to - and that when I am ready to move forward, I will get well. A few other people are disappointed in me because I won't go as an inpatient in hospital and leave Ophelia: what for? there is no treatment -- and Ophelia is all I have, she would be a different cat when I return - we have been together 24/7 for 3 years, she was cruelly treated as a kitten and now is a confident cat around me. When visitors arrive here she acts timid and withdrawn. As soon as they leave, she swaggers around like queen of the castle. I can't imagine anyone else having the time and love for Ophelia, that I give. She gets a cuddle every few hours, is let out half a dozen times a day, and gets treats and playtime twice a day - we have a routine that works like clockwork. We go to sleep and awake at the same time. She knows where her bed and food and emergency tray is (she never uses it because she is in and out all day). If I am not on the couch, she comes looking for me. And she comes into my bedroom at the crack of dawn to wake me up. She has several different places to sleep and hidey holes when she hears fireworks. I have never left her alone. I cannot imagine her in the pen of a cattery. She would cry and get confused and distressed - and so would I.
What I am saying is people don't seem able to accept that some things just have to be the way they are. There is not always a fix. And chasing rainbows can be a waste, and risky. Everyone has their own way of coping. For me, at this point in time, it feels better to try the only thing that has been proven to work: complete rest for as long as it takes.
I am still not at the stage of being able to have six weeks consecutive rest. Something always crops up. So I am being proactive now, and getting certain household tasks and maintenance taken care of within the space of weeks and months, to make way for the rest regime I am planning for Spring.
By Summer I expect to be able to lay on the balcony in the sun - and to take a walk down to the beach. I cannot recall when I last did those two things. Certainly I have had no sun on my body for two years. The last time I walked 50 yards to the beach - and 50 yards back was probably about four years ago.
If by this time next year none of it has worked, I shall have re-think and maybe even save the money to have a private specialist come visit me. I will listen to what they have to say because by then I will have tried everything that is within my power to try. Getting household and food organised has been the biggest hurdle that has taken four years to overcome. My extra new food freezer and dishwasher have made a huge difference.
Unless unusual new symptoms flare up, I don't see any point in wasting energy and life bothering the doctor or spending months and years experimenting with pills, potions and anti depressants. Who knows what they do to the body. The ME patients I've spoken to who are severely affected affected for more than 10 years have tried all of the things I have mentioned, none of them have recovered at all. Their lives, what was left of them, have been sucked out of them by regular doctors appointments, visiting specialists, acupuncturaists, herablists and trials with all sorts of other things. One sufferer told me a big thing 15 years ago everyone tried was taking freezing cold baths. In the olden days there were experiments with polio patients, putting boiled wool on the backs of their legs to get them to move their muscles - the wool was so hot it blistered their skin. Of course, it didn't work.
Having said all of that, if a whole team of doctors, nurses and specialists turned up here, I would not object to a single thing and would go along with everything they say. The thing is what I cannot do, is organise all of that for myself. It is just too physically and mentally demanding to organise. No matter how hard I'd - and I have had a reputation for moving mountains - I cannot manage it all by myself. I cannot organise my own healthcare - if I could, I would not be so ill or need looking after. People just don't seem able to grasp that it takes everything I have just to manage the basics of each day - just getting through the day and keeping clean, fed and watered - along with Ophelia and a few plants. Something like Christmas, is too much to fit in on top of getting through the day, which is why I experimented with letting Christmas pass me by this year. I did not start ordering cards and gifts in summer, or start writing/wrapping in September to get them ready/posted by Dec 6. It was too depressing though. I shan't be doing that again. If it sets me back til Feb, so be it.
- - -
An editorial written by Dr Peter White entitled 'What causes chronic fatigue syndrome?' appeared in the British Medical Journal on 23 October. Dr Charles Shepherd, medical adviser to The ME Association, has submitted the following MEA response to the BMJ, asking it to be considered for publication:
Earlier this year The ME Association organised a petition calling for urgent government-funded research into the physical causes of ME/CFS. Over 28,000 people signed the petition, which was later presented to the Prime Minister. The front cover of our current magazine depicts volunteers climbing up Ben Nevis to raise money for ME/CFS research. Such is the frustration of people with ME/CFS who do not believe that their views are being listened to by the medical establishment.
So an editorial in the British Medical Journal (1) reviewing the possible causes of ME/CFS should be good news. But is it?
Whilst many doctors support the idea of a disease model involving predisposing, precipitating and perpetuating factors, Peter White's editorial provides a highly selective review of the evidence so far. Crucially, it fails to offer any innovative suggestions as to how this model could be used to gain a better understanding of the underlying physical causes of ME/CFS and so develop more effective forms of treatments. Instead, all that is offered are two very familiar solutions: cognitive behaviour therapy (CBT) and graded exercise therapy (GET). And although these approaches may provide some benefit to some people with chronic fatigue, they are of no value at all, or may even be counter-productive, to others who come under the umbrella of ME/CFS.
The medical profession has only itself to blame for the awful mess that currently surrounds ME/CFS. It has created an illness that covers a wide variety of fatigue state clinical presentations, with or without psychiatric co-morbidity, and almost certainly an equally diverse range of possible pathological and physiological explanations. Doctors who deal with patients suffering from unexplained abdominal pain, arthralgia or headaches do not work on the basis that they all have the same pathoaetiology and will therefore respond to the same form of treatment. So why apply this form of flawed logic to ME/CFS?
And it should come as no surprise to find patients expressing deep frustration when they are told that while over £4 million is currently being spent on government-funded research into ME/CFS, this is all going on yet more studies into behavioural interventions, with nothing whatsoever going to underlying causation. There are numerous areas of research that could and should be pursued: in particular the need to look at mechanisms involved in the production of debilitating fatigue in conditions such as multiple sclerosis, primary biliary cirrhosis and ME/CFS, where it cannot simply be explained as being due to deconditioning.
What we need is thought-provoking research which doesn't take the simplistic view that ME/CFS essentially comprises of abnormal illness beliefs, abnormal illness behaviour, and the consequences of inactivity. The World Health Organisation now classifies both ME and CFS as neurological disorders in section G93.3 of their International Classification of Diseases (ICD10). The UK government agrees with this classification. So let's have a look at the neurology of ME/CFS for a change - instead of pouring yet more money into the bottomless pit of psychology.
Reference
1 White P. What causes chronic fatigue syndrome? BMJ 2004; 329: 928 - 929 (23 October).
Dr Charles Shepherd, Medical Adviser, ME Association, 4 Top Angel, Buckingham MK18 1TH, England, UK.
Conflict of interest: Physician whose ME was precipitated by chickenpox encephalitis and who used to be very physically active as a child as well as prior to developing this illness.
http://www.meassociation.org.uk/fwhats_new.htm
posted by Ingrid J. Jones at Saturday, February 26, 2005
2 Comments:
Thanks Carrie. How come you, who does not even know me, believe that but others who do know me don't believe that? My guess is you have empathy because you have gone through something similar. What other explanation can there be?
What you have just said here, I recently told to a friend who feels that mind and body are all one - hence her belief that this illness has an element of "mind over matter". Her answer was to call me arrogant because I think I know better than a doctor. She got mad at me for being "arrogant" like I know it all when it comes my condition. She said sometimes other people know better, and that I should listen to other people. She is convinced I am depressed, and if other friends insist I should go to an ME hospital, then they are all right and I am wrong.
Even though I have explained to her my original GP who insisted I was depressed (while I insisted I wasn't) made me see a consultant psychiatrist before she would issue another sick note. My illness started with a viral illness that showed up on blood tests.
The consultant confirmed I was not depressed but suffering from Post Viral Fatigue Syndrome/ME. She got miffed when she received the diagnosis and said there was nothing she could do for me if I refused to take treatment. I said there was not treatment. She said there was (anti-depressants that did not work) but it did not work.
I told my friend this. Her answer was that things have moved on in five years (not true - but she does not believe me) and says there are specialist doctors out there who can help (I believe I know of every specialist in the world through my two years of keeping up to date on the internet) but she does not believe me when I say there is still no treatment or cure.
I can see where she is coming from. But what hurts is that this friend and others are undermining my perspective and judgement when they do not believe me. If they really knew me, they would know I do know what I am dealing with better than anyone.
Thanks again for commenting. In the past week I have installed a NetNewsWire a great easy to use news reader for Mac users. This will enable me to keep up to date with your posts as and when they are posted.
Hello, Andrew. Nice to meet you. Thank you for commenting. I am always surprised when someone comments here because I do not post on a regular basis. Only when something catches my eye that I want to file away. This was supposed to be a daily blog but has ended up as a filing cabinet for my M.E. stuff, news clips etc. Most of my blogging energy is taken up with my Sudan Watch blog at http://sudanwatch.blogspot.com
One day, when things improve in Darfur, Sudan - or I can't stomach it anymore - I will reduce the frequency of postings and concentrate more on this blog.
If I was well, I'd be capable of maintaining all my blogs regularly. I've no idea where you are located - I was hoping your link would lead to a blog.
Why do you not start a blog? They are completely free of charge at Blogger.com Even if it's just a few lines once a month - it's more productive than doing a crossword and helps to maintain computing skills. Plus, that way, I can find you. Unless you visit here again, there is no way for me to contact you or for others to find you.
Please leave word if you read this. So sorry to hear you have been going through what I am going through.
If you want to read my full story - go to my personal blog ME AND OPHELIA at
http://meandophelia.blogspot.com and click into July 2003 in sidebar where you will find my first post - around the 9th I think - which contains a copy of an article that appeared in the magazine for the Association of Reflexologists in the UK.
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