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What is Long term Glandular Fever/Chronic Fatigue/ME?

   Long term Glandular Fever is my name for the set of symptoms that I suffer. If you have been diagnosed with CFS, ME, PVS or the like, then the information here on this page should be just as relevant to you. I myself have been diagnosed with GF, CFS, PVS and ME at different stages of my illness.

   There is no consensus on what CFS/ME actually is, let alone the biology of what causes it. Constant fatigue which gets worse with exercise is pretty much how I would classify Chronic Fatigue Syndrome (CFS). It is often brought about following a protracted viral infection. (Hence another name for the illness: Post Viral Syndrome).

   There is a strong link between Glandular Fever and Chronic Fatigue Syndrome (and ME), in fact an older name for an illness very similar to CFS is Chronic Epstein-Barr Syndrome, which implied a direct link between the 'Mono' virus EBV and long term persistent fatigue in some people.

   From my perspective I can say that it would be wise for anyone with Glandular Fever to treat the illness with the respect it deserves... bed rest is not only the best cure, but probably the best way to ensure that the illness does not out-stay what little welcome it had in the first place!


What are the causes?

   The symptoms of GF seem to be a reaction to the virus which is dependent on the individual - in fact I read that most people have been exposed to EBV at some point in their early lives, though only a few are brought low by it. People with CFS/ME/LTGF may be those who have contracted a virus and produced an inappropriate reaction to it. To me this suggests a genetic factor, a weakness within the sufferer which leads to the illness becoming chronic. Anecdotal evidence I have supports this.

   Whether CFS/ME/LTGF is caused by an active viral infection, or the result of the immune system failing to 'switch off' after a viral attack is very much open for debate. Either way I think it is fair to say that we rely entirely on our immune systems to cure us. Science offers precious few drugs with antiviral properties (and those that they do have often cause side effects very similar to the symptoms of our disease!)

   In truth, currently there is almost no understanding whatsoever as to why the cycle of symptoms repeats itself. From a personal point of view I think it's worth taking the time to ensure that you haven't burnt yourself out - or are not suffering from an underlying depression - but generally sufferers all report a crushing physical reason for their problems. The cause remains entirely unknown.

   Something that I heard about a while back which seemed to ring a bell with my experience was described as a hypersensitivity to stress (of unknown cause, though I suppose we could name a few candidates, EBV included). Adrenaline is designed to get you out of a situation quickly - it is not designed to be very good for you - and over long periods can cause damage. The idea was that people like us are in a constant stressed state (or over-react to stressful situations) for physical reasons, Eg: hormonal etc.

   Whatever the cause, CFS/ME/LTGF is a serious illness which has cost many people including myself their career and their mobility. Some have lost their relationships too. It clearly warrants more research.


Fighting the illness

  CFS/ME is the embodiment of the Chinese (monkey) finger trap - the harder you try to pull out, the stronger it grabs you. Fighting the illness cannot and should not be a physical thing. Please take heed: this is coming from someone who stubbornly tried to fight the illness for over 10 years!

  I always considered any definition of 'learning to live' or 'accepting your limitations' to mean that I was giving in to the illness. The truth is far from it. You can fight LTGF/CFS/ME, you've just got to do it very very quietly!

  So, don't fight the illness physically. It simply doesn't work: You are not in control of your body's healing mechanisms and cannot just will yourself better.

   Further, you can't exercise it away. This path only leads to frustration and more illness. My advice is to save the energy and use it on something that you'll enjoy.


Rest! Rest! Rest!

   A doctor wrote to me to say that recovery/management from CFS can sometimes depend on quite radical changes in lifestyle. This is true and just gets truer the more active you were before you became ill!

   The first thing to say is simple: Treat what is treatable. Lots of secondary symptoms during your long term illness can be treated. This ranges from antibiotics for throat infections to anti-depressants for depression (See below). Make sure also that you have tried to get adequate pain relief. Constant low level pain (often surprisingly not recognised for what it is) can wear down your inner strength. The idea is to support your body's own healing processes as far as you possibly can - hopefully leaving them to sort out the main problem.

   The second thing to say is that you must start to understand that your energy levels are limited. I like the 'I'm running on a battery which won't hold its charge' metaphor. This best describes how I feel. You're aware of your limitations but you cannot influence them directly, you can only hope to try to recharge as often as possible.

   In reality you've already had the illness long enough to know what the best and most effective treatment is: resting. Sleep is really important for the condition, indeed sometimes it seems like it's the key to the whole thing. Apart from that any and all forms of being inactive seem to be helpful! They won't fix the 'battery' but they'll give you a chance to recharge it.

   I'm sure that you don't want to hear this again, (I certainly didn't), but the most important advice I can give you is to REST REST REST! Currently there is no substitute for this I am afraid. To really give your body a chance to see off the virus properly (and for good), you're gonna have to find a way to allow it time to cure itself.

   You can only start to build up your strength/fitness when you are sure that you are not doing yourself more harm than good by exercising. I suppose it's a case of listening to your body, trying to make sure you rest as much as possible, while still keeping enough low level activity to stop yourself seizing up.

   I think that with a bit of careful planning you can still collect enough experiences to make each day worthwhile. Sure, sometimes it might feel as if you're locked inside a battered and broken machine - but even in this condition it is still one of the most complicated and wonderful things on the planet.


Budget your energy supplies

   One of my doctors (with personal experience of the illness) described the problem as one of having a certain, and very limited amount of energy free for the day, and if you use up more energy that this, you start to make yourself ill. Essentially it all boils down to one obvious fact: your body is constantly using up energy to power your immune system.

  Supporting your body while it works toward a resolution means resting, but it also means planning your exertions and allowing for the necessary recovery times.

   Budgeting your energy supplies and managing your life around the illness is easy to think about, but quite difficult to put into practice. However, you know that certain things take power and that if you go out and do them you'll end up in bed for a week. If you can plan to allow time to rest in between periods of activity you will notice an improvement at the very least in the quality of your life, but most likely your illness as well.

   Promise your body today that you won't put it under too much strain without having already planned a suitable recovery period straight afterwards. Maybe if it learns to trust you in this way - it'll be happy to provide you with a little more power than before! Perhaps even better - try to store up extra energy before you know you're going to need it.


Bolstering your mental health

   While if your body has it's way you'd be in bed all the time (and still without a decent immune response - I know, I tried it), your mind also has needs that must be met.

   Sometimes you have to blow the budget. If you spend all your time being sensible with your energy levels you run the risk of ruining your mental health through lack of activity, lack of experiences. So, sometimes I find that it is good to go a bit 'wild' and forget the consequences. While doing this too often can quickly bring you to your knees, without some form of mental release you'll make yourself more ill. Further, the release will give you the positive attitude needed to continue the fight.

   Trying to live with CFS/ME/LTGF feels like you are fighting against the current. At some point you must give your body a rest, but on the other hand if you rest all the time, where's it's incentive for getting you back on your feet? Surely you need to remind it every so often that it is supposed to be working on restoring your activity?

   Living with GF seems to be about balancing your physical and mental needs. Often this will mean that you will have to reduce one to benefit the other. Rest is very important for your body, but as you've probably already found out yourself, it can eventually reduce your mental health to a point where you loose a large amount of your quality of life. Conversely, while exercise can be great for your mind, getting out there and living will quickly destroy your physical health.

   There is no way of getting around this paradox, and so its worth taking the time to think it through so you don't end up beating yourself up when a decision you have made comes back to haunt you. Once you've managed to accept that you have the right to push yourself or to hold yourself back, the next part is telling the people around you. It's not an easy one to explain to them, but you have to try to make them understand.


Seeing the doctor

   The first thing to say is that while I have been, and will continue to be miserable in regard to my experiences with medical professionals on this topic, I still say to you that the very first thing you must do is to go and get yourself properly checked out.

   When you go along to the doctor make sure that you have blood tests for everything under the sun. While there isn't a test for CFS per se, there is a test which can detect viral proteins in the bloodstream which can indicate that there has been a recent infection.

   Don't let the doctor misunderstand the seriousness of your symptoms - physical fatigue from GF is just that physical - don't let them try to pin it on depression if you know in your heart that that is not what the root cause is.

   For some reason, doctors feel that they should be able to cure any patient who arrives at their door. (Some doctor's blame the patient's expectations for this reaction). This is clearly ridiculous, but still, it makes them feel bad. Sometimes their response is to turn the tables - it's not my fault you're ill - its yours! This is quickly followed by, "It's all in your mind", "you don't want to work", "you're perfectly well actually..." etc etc. I mention it here because you need to be prepared for this reaction. There's nothing you can do about it - and I'd recommend simply finding another doctor.

   When I was younger a consultant suggested that I was unhappy in school and not really ill at all. He suggested that I see the psychiatrist. I refused. Thankfully my parents did not force the issue, they trusted that I wasn't making it all up. Be prepared to fight your corner - (or fight on behalf of a child). Be aware that the mental health route may or may not be appropriate.

    Getting a diagnosis

Without wanting to throw a downer on you, do remember that if you do have CFS or something similar, then a diagnosis isn't really going to be of that much use - it's not the first step on the way to a cure, rather it's the end of the line (and you might catch the doctor flashing the surgery lights shouting 'All change please' and pointing at the door).

   There are some benefits. It might help your family to know that you have been diagnosed with something, or it might help you in regard to your work. However, don't expect everyone to suddenly come around!


Tests

   The test for Glandular Fever (which I expect all CFS/ME patients would have been given as part of their diagnostic path) does help in terms of proving you are physically ill with something (this can be important).

   I suppose it also does go to show that your body is producing antibodies - though I have to say from experience that this doesn't necessarily mean you'll find yourself leaping around shouting "I'm cured!" immediately following it.

   The fact that some people don't get over GF very well is a fact but only you and your doctor can tell if it applies to you. Unfortunately there isn't yet a test for chronic or long term Glandular Fever, Chronic Fatigue Syndrome or ME.

   You can be checked for the presence of viral proteins in your blood, but even this only indicates that there might possibly be a viral cause for your illness.


The Name

   A large number of my correspondents really don't like the name they have been given for their particular set of symptoms but since there's no cure or test as yet for any of the various diseases of varying labels none of us can really be sure as to what particular syndrome we have.

   Terms like PVS, CFS, ME serve to roughly group people together but in truth say very little of any value about the disease (or diseases) that are making them unwell. Indeed they can often point people in the wrong direction. Mostly they just serve as labels and nothing else.

   A doctor I once had let me choose from a selection of 3 for my 'official diagnosis'. I first chose, PVS but Post Viral Syndrome eventually didn't seem to fit in with the effects of what seemed to me to be an active infection. This was born out in tests. (I still feel I am actively fighting something). The next time the issue came up I chose the term CFS (I was probably feeling particularly knackered at the time!). Finally I've come back to GF - since this is what the bulk of my symptoms have been from the beginning. Though I am conscious that I do not want the label to limit research to EBV alone.

   Moral: call it what suits you and seems to be closest to the truth.


Coping with symptoms and loss

   One ME sufferer I met remarked that one of the major symptoms of his ME is bruised shoulders - brought about by all the door frames he walks into!

   I've noticed this year that my own brain-fog type symptoms come and go, I mention this here briefly merely to reassure you those that suffer this common symptom that the problems are not necessarily with you for good.

   There is no nice way to go about accepting new limitations. Personally, I don't think I really ever have done so properly: I still expect and hope that I'll regain my former strengths at a time in the future.


Weight Gain

   I've put on weight. It's really tricky because as you know, exercise when you're unwell only makes you 10 times worse, but of course exercise is the only way to loose the pounds. Also, I've found that I can see a clearer through the fog which descends on my brain by supplementing my diet with bags of sugar - in the form of pepsi-cola, sweets, you name it. Uh-Oh!

   Of course not all my weight gain can be blamed on lethargy and sugar induced brain activity - I'm of course eating an increased amount of food because it feels good - and while this comfort eating is fine (and possibly to be encouraged) during a short illness, once the illness starts to drag on and you're still relying on it you're heading down a dangerous path - especially if the weight gain starts to depress you even more, for then you're getting no mental health benefit at all from the food you're eating - it all goes into an 'I'm a fat pig' downward spiral.

   Try to maintain your weight at a steady level, don't diet, and don't reduce your water intake.


Sleep

   It's really hard to do anything when you're ill - your body is making sure that you don't go out and waste the energy it could be using to fight the illness (or at least keep a lid on it). The trouble is that unless you're active during the day, you're not going to have an easy time sleeping - which only then serves to make matters worse.

   Make sure you're sleeping okay, and if you're not try to get the doctor to help you.

   Yep, my own sleeping pattern is absolutely knackered. (It's has entered 'free fall' more times than the space shuttle!) I don't know how it is related to the rest of my illness, maybe it is the cause of some of the symptoms that I exhibit, or maybe it is my body trying to fight off the infection. Either way it is a pain!

   That's not to say that my troubles getting to sleep are entirely to blame, sometimes I think that it's the fact that I normally don't seem to get the true benefit of my sleep. Perhaps my body's too busy fighting my illness to bother with other things, perhaps the system is just interfering with the normal workings of sleep.


Sex

   The illness can certainly play havoc with a sex live (that must be why they call sex 'shagging' - it's so shagging that I'm tired out almost before it's started!).

   However, the illness doesn't preclude finding love - it just makes it more difficult to get out and do the actual search. My own love has been a tower of strength for me.


Depression

   Secondary depression, (reactive depression) ie depression brought about from the fact of being ill is quite common, especially for people who have been ill or in pain for a long time.

   It's tricky because some of the symptoms of LTGF/CFS/ME are so similar to those of depression. Further, being physically incapacitated all the time is more than likely to make you depressed, so the water gets even muddier.

   Personally I felt that it was my job to sit down and work out if I was depressed - unfortunately I almost certainly was. However, in my case I also decided that it was not the cause of my problem - there was something physical wrong. Eg, there has barely been a day in the last 15 years when I haven't got up and tried to be active, tried to live my life as normal - and without exception something physically has to drag me down to stop me from getting 'out there'. The fact that I have on many many occasions just gone out and 'gone mad' saying 'to hell with it' kinda tells me that I have not only the mental strength to get through the day, but also to fight the illness head on. (Though as discussed above - this is not a successful strategy).

   The trouble is that loosing your health at any time in your life really is depressing. While certain people can cope with life better than others, just above everyone gets fed up with GF/CFS/ME after a time. For many it is the loss of the life/strengths/interests that they used to have, for others it is simply the muscular pain.

   You've got to be tough here. Are you depressed? Only you can really work this one out. If you think there's a problem, do you believe that medication would help? It's a really tough call - especially with doctors all too keen to jump on depression as the complete cause and anti-depressants as the complete cure of your problems.

   Is your depression caused by the physical symptoms of your illness, Eg: pain can be wearing to the point of depression. Or is it more the fact of your illness (and the limitations it brings) that brings you down?

   You've got to be honest with yourself: Have there been incidents in your life which might have lead you to the stage where you just don't have the mental power to be able to 'get out there' any more, or, is it that you simply don't have the physical power to achieve what you want to do?

   While rereading the wonderful mails sent to me this evening, I have noticed that a quite a few fellow sufferers are what I would consider to be severely depressed. Depression warning signs, such as feelings of worthlessness, the contemplation of the taking of ones own life etc: If you get to this stage see your doctor without delay, take antidepressants - it simply isn't worth risking your life because you want to deal with your depression yourself. Depressive thoughts need to be nipped in the bud... and if you find that you can't - you have to ask for help.

   The trouble with long term GF and depression is that it is very easy for your doctor to blame your physical symptoms on your mental state, whereas you may think that this is analysis is the wrong way around. Finding a doctor who treats GF with respect may be difficult and might only be worth it if you require documentation or treatment to manage the secondary effects of the condition, (remember however that finding a doctor to check you out initially is vital).

   Speaking personally again, I am extremely positive and capable of focused work, and energetic conversation, and yet I have had to sit though consultations where the doctor was trying to convince me that I am depressed enough to warrant treatment. My answer to this now is that there isn't a single day, hell, a single minute of a single day when I don't get up and try to actively improve my life. Of course my illness keeps me down and in place - but I ask you (and naturally hope the reader to hear you cheer me on...)... "Does that sound like a depressive attitude to you?"

   Its one of those self fulfilling prophecies. "Well, I wasn't depressed doctor, but now you've just blamed my whole condition on a non-existent problem, actually, I do find myself becoming quite depressed!"

   That is not to say that I never get depressed - or am not permanently saddened by the effect of the illness on my life. A large part of the depression that I carry around is probably grief. I feel a great sense of loss for the skills, opportunities, career etc that the illness has taken away from me. Physical inactivity and the resultant lack of fitness can lead to depression too. The depression here is more frustration than hopelessness, and I think that it is important to make sure that anyone treating you should be aware that you are depressed because of your illness, but depression is not the root cause.

   Here again you'll have to do a bit of soul-searching to make sure that depression really isn't the underlying cause of your problems. The way I think about this is by asking myself the question, "Do I want to go out right now and run the London Marathon?" Answer: "Yes I do, but I won't because it will mess me up physically". Therefore it's most probably my body which is ill not my mind. The answer may well be different for you - whatever it is - act on it! Get appropriate help!

   I suppose everyone feels some self-doubt/guilt after so long being out of action. I was reading an article the other day about secondary depression with CFS. The article underlined the fact that people with CFS organise groups, put up websites and generally feel frustration with their bodies - quite unlike the actions of depressive patients.

       What you can do.

   I started this part of the website wanting to get a few things off my chest: mainly how I was treated by the medical profession. However once I started I found that it was really good to shout. And, perhaps because of the way in which the site is published ie, there for anyone who wants to read it but not forced upon anyone, I feel that it is a lot less indulgent than pinning some poor soul down and moaning at them for an hour! (Not that it's stopped me doing that on times!).

   Over the last few years I've made some progress: I got rid a load of the depression the illness on the web site; I 'grieved' for the physical powers that I had lost; I learned to plan for the inevitable results of over exertion and ensured that I was getting the most of my life that I could possibly get.

   I don't think there's much good in trying to keep these things to yourself - hence my rather public airing of my experiences. I must say again I really felt better getting some of it off my chest. Hopefully as time goes on I will be able to change the site from being a memorial to my illness to a source of help to other sufferers. I think this document is a part of that.


Anti-Depressants

   I think that Anti-Depressants are a personal choice. There is a very strong argument to say as I have above: 'treat what is treatable'. Since the depression is something that can be removed/masked from your problem it is treatable and can be one less thing for you to suffer from. It might even help to boost the functioning of your immune system. However, from the other side of things, you might think that you've lost quite enough of your physical life already to go loosing part of your mental life. Personally I think that both viewpoints are equally valid.

   Clearly any patient offered Anti-Depressants (ADs) should listen very carefully to their doctor's reasoning and advice. Ultimately however, only the individual can decide if they can cope with the depression brought on by the illness. It is a shame that the individual is often too close to see their state of mind objectively - and this too must be carefully weighed before a decision to go, or no-go is taken.

   If I am honest my own decision not to take Prozac wasn't because I decided I wasn't depressed enough to warrant it, (I probably was). It was because I wanted to deal with the problem myself. Further, my own depression was secondary to the illness itself - and no amount of Prozac would be able to conceal the logical truth that I was disabled and pretty much house-bound. I honestly don't know whether this was a good decision to make - it has certainly cost me dearly in terms of health - I now smoke for example.

   I think that a possible median point would be to have a A-D prescribed to help your sleeping (if your's is as messed up as many of my corespondents you'll understand how beneficial this could be).

   Whatever you decide in regard to Antidepressants, don't ever underestimate depression and if you can, find ways both inside and outside of yourself to deal with it. Being careful not to more harm than good to yourself.


Mental Attitude

   I do not believe that my mental attitude has any real effect on my physical health: how 'well' I am feeling at a particular moment is unrelated to whether I am happy/sad. I suffer from what I believe to be a physical complaint, one which is effected most by energy output be it physical or mental.

   However, it has to be said that I haven't managed to throw off the illness. Since this relies on my immune system and that in turn is said to be influenced by one's state of mind, one can presume that a positive mental attitude might contribute positively to the removal of the virus. I really don't know. I generally have an extremely resilient and positive outlook - but I am still ill!


Family and Friends

   Friends/family are great when you're under the weather for a bit, or have an obvious complaint like a broken leg, however when things drag on for ages their empathy can dry up. You're going need to do some soul searching at this point and if your symptoms are real then don't let anyone say otherwise. Personally I found a reasonable amount of sympathy to start with, which quickly ended when it became apparent that I simply wasn't getting better. However, once they do catch on to what long term illness means - hopefully you can then rely on them (as I have done) during the bad times.

   People's reactions to long term illness are generally pretty poor. It takes about 5 years for close family and friends to really get the idea, (and you can double this for other friends). This is made worse by the fact that with this illness sometimes they see you comatose on the sofa (equated in their minds to apathy/laziness), whereas other times they can see you rushing about (equated to either recklessness endangerment of your own health, or reinforcement of the 'fact' that you weren't ill in the first place).

   While people around you might grow tired of hearing about your illness at certain times, when they themselves are feeling okay they can better listen and help you to deal with your problem. Make sure they know that you are ill but choose your moments! Further, I think it is important to make sure that when you are feeling a bit better than usual that you make a point of making up for all the past negativity by telling people the good news! (Even if that news is only good relative to the crap you usually have to put up with!)

   I wouldn't wish the illness on anyone but, people don't truly understand unless they've had it, or seen a close relative taken down with it. Even then they don't really understand - only you know what it feels like!

   Apart from that, people like to see you trying to fight against your illness, which in terms of ME/CFS/LTGF, is just about the worst thing you can try to do. Here there is no alternative but to sit them down and make them understand that you have limits to what you can be expected to do without making yourself ill. If this fails you'll just have to wait for them to observe the truth over time.

   My advice to parents is to continue to trust what your child is telling you, even if doctors 'can't find anything wrong', (you'll know if this is good advice for your child). While I don't blame my own parents for pushing me back to school each time I came down with the illness, it is clear that on each occasion I was not truly beating it off, possibly leaving me in the situation where I now find myself. Rest at an early stage could well have saved me a great deal of time in the long run.

   For me, I need people who are close to me to understand that I have a disabling condition, and that sometimes I am in some pain. I also need people to understand that sometimes I feel like 'wasting' a bit of my precious energy pretending to be fit and healthy... just to keep me sane!


Working

   I think it is fair comment to say that the current 'world of work' is pretty much set up to suck your energies dry if you're not very careful. If you are still managing to work with LTGF/CFS/ME make sure that your co-workers know that sometimes you simply cannot afford to bend over backwards to help them with their problems as well as your own - make them understand that if pushed they will end up having to cover your you (in your absence due to illness)! Keeping all relevant people informed and teaching them about your limitations is probably the best policy in the long run. The same applies to family.

   In terms of schooling: while your exams are extremely important, they are not absolutely vital to your future success - your health is the most important factor in deciding what job you can eventually do. I can testify to this having had to turn down a number of jobs I have been offered these last few years: My health has negated a huge amount of my education and skills. However, that said, it is fair to point out that you only get one chance at exams - it is very difficult to catch up at a later stage in your life. This one will require discussion with your family/teachers.

  Personally, I have managed to work throughout my illness, though my output has been severely reduced. I have had to fight for every hour - (and whether this has been a good thing to do I can't say). All I can say is that a) I had to work (it's just who I am). b) I'm still ill 15 years down the line.

   If you must work (and I think it is fair to say that the tone of this document implies that you should put your energies into healing rather than activity), then there are things you can do to make it easier on yourself. First an foremost, try to remove needless energy expenditure. Eg, I now work from home on the computer - saving myself a devastatingly tiring journey to work every morning and evening. Secondly, try to work at a time of day when you feel your energies are at there highest. I have found late at night to be particularly good for me - I have no idea why, but that is a time when I know I can get the most out of myself. Finally, don't forget to budget your power. Planning your working week to allow for time to make up for energy expenditure could make the difference between a lifestyle which works and one which sends you straight to bed again.


Computers and the 'net

   When I was in school no-one really realised that the true power of computers would lie not in computation but in communication. Now we find ourselves in a world where even those of us who are under the weather find that we can go out and about, meeting new people and learning, all from the relative comfort of our armchairs at home.

   When my computer boots up, it automatically launches 8 pages that I regularly read and checks my email and newsgroups. With this kind of support I can manage to keep myself active even on my worst days!

   Online you will find piles of data, but you must remember that the internet is an unreliable source of information and interpretation is crucial. You must take everything you read with a pinch, (nay, sackful) of salt, and distrust just about everything you read until you are sure where the author's motives lie.

   I would caution against doing too much research online. While I appreciate that people in our situation have thus far found little comfort in modern medicine, and there is a strong temptation to try and make some progress yourself, in truth this kind of quest can eat up your precious time and energy: it's not resting, it's not accepting your present limitations, it's fighting actively - and as such it might make you more ill.

   Remember also that the internet works both ways! I successfully dumped most of my troubles out onto the internet and can honestly say that uploading, posting, talking and moaning has helped my mental outlook no end!

   Finally, remember that the internet isn't just a huge data-warehouse - it is full of people. There are many excellent support groups out there. This will prove that you are not suffering alone but it will also provide you with a valuable news feed - if and when a valid treatment is found you can be sure that you will hear about it quickly.


Self Help and 'cures'

   I've tried a few treatments in the past, but have come to the conclusion that no system has anything to offer the GF/CFS/ME patient. While this is extremely depressing, at least it keeps me from getting my hopes dashed every two minutes. I think that I will probably just have to wait for my body to sort things out in its own time and in its own way. Frustrating, but there you have it. Other people are more optimistic, some even claim that they have been helped by following a certain treatment regime.

       Graded Exercise

A lot is made of graded exercise - gradually pushing yourself a little each day. I think this is a bad idea. People with the illness have a certain set amount of power each day, and expending it on an exercise regime is a waste. However, having said that, if you let yourself fall into a mental and physical stupor, you'll also be doing yourself no good at all.

   Keeping active, for me at least, is the process of every so often getting outside and doing something, even with the knowledge that it is probably going to make me ill for a while after. The key difference between this and graded exercise plans is that my excursions are occasional with planned recovery times - they are not regular and do not increase in severity.

   Personally I've found that at best exercise takes up precious energy reserves, while at worst it makes me extremely ill indeed. While there's a certain amount you have to do to keep any kind of health and there's a element of 'use it or loose it', I have to say that I have found doctor's advice to both rest and take exercise contradictory and detrimental to my health. Your mileage may vary of course.

   Get anything that is treatable treated. If you've got a sore throat get anti-biotics. I got so fed up with the medical profession that I let my wisdom tooth and my chest cause me problems over and above what I already had! Madness.

       Alcohol.

I treat alcohol as I do exercise: if I feel I can spare some energy in a day I'll allocate some of it, if there's simply none left, I'll either do without or make myself ill by doing it anyway! (The latter is important to do sometimes). Either way, alcohol has a recreational use only - it is NOT a long term Anti-Depressant and will mess you (and those around you) up if you try to use it that way.

       Smoking.

   I tend to smoke when I'm in muscular pain. Whether this numbs the pain, or just numbs my brain I can't tell you, but it seems to help. However, it is pretty stupid really - my body is far to ill to go wasting energy repairing my lungs. Why do I do it? Well, I have had times when I could have gladly cut the muscles from my own body just to stop them from screaming out. Some of my correspondents have recommended pot. I don't, but I understand and respect the choices that they have made.

       Web 'cures'

Should you spend loads of money on a cure you've found on the web? Further, what if someone approaches you personally/via email to let you into a 'club' of people who have all been treated successfully? Beware!

   It is fair to warn you that I have been approached by people offering treatments - from the perspective of 'one-time-sufferers-now-cured'. Be on your guard! Some of these are treatments are truly expensive!

   There are people out there who will exploit you. There are also well meaning people who got better and think it was due to a particular treatment plan they were on at the time - either way, you could end up spending a lot of money if you're not careful.

   Personally I've spent cash on Chinese medicine and my correspondents have paid out on any number of things: nothing works for sure. Sometimes the treatment pack is mere information. If it is effective why isn't it available for free online? Listen, if one of those packs worked the structures are in place to disseminate the information across the world very quickly indeed. The fact that there is no such information available strongly suggests there is nothing in these treatment but the dreams of sufferers.


Remember, if you're desperate for a cure - you are vulnerable.

    Supplements

Many other web sites want to get your money indirectly via 'nutritional supplements' - usually sidelines which do more to supplement their own income rather than your diet. I am very wary of these indeed - especially if we are talking about a viral cause for the illness.

   People sometimes write to say that they've tried X and it cured them. While I do not doubt the messages were sent in good faith, there is no common theme to them, which suggests to me it's more likely that they were cured by chance/time/their own immune systems finally cracking the problem.

       Coping strategies

   Keeping your brain active is a priority, unfortunately, learning (or being creative) is a very tiring process. However, letting your brain slowly liquefy probably isn't going to help you much either. Books on tape? Music? Starting arguments on usenet? (a personal favourite). Actually, computers and the internet are a God-send for CFS/ME sufferers. (See above).

   While socialising can really take it out of you, the flip side to this is that the more disconnected you get from people the more you can sink into the illness - and that's surely doesn't help. Make sure you are getting out and talking to people, even if the trip is just made in cyberspace.


Getting better

   All I can say is that people do get better from this illness - but in their own time. You'll know when it has happened (sometimes overnight, sometimes over a longer period) - You'll find that your daily energy supplies have increased and that you no longer have to 'borrow' from your health to keep your life going. Remember that LTGF can go as suddenly as it came, and that most people get over it in a reasonable amount of time - especially if they listen to what their body is telling them to do.

   While a cure is possible, it makes sense to plan for the worst - being permanently disabled by the illness. Hopefully the treatment strategies mentioned above are also coping strategies, in that even if a recovery does not come in the long term you have still built enough new interests and skills to fill what you have lost.

   There are people who have written to me who have mentioned having the illness in the past - and they're almost blasé about their recovery. I think this is a matter of perspective. To those that are currently ill a cure seems like a magical and wonderful event, while to those on the other side the cure (and to a large extent the illness) is forgotten in amongst all the wonderful things that they are filling up their new lives with!

   Have a look at the The ME tips collection: http://members.aol.com/ZoeWill/TIPS.html

   Looking back on the above, it certainly does seem that we have shared a great deal of experiences over the last years. I hope that by now you've managed to develop some kind of system to claw back as much of your life as possible from the disease's clutches. I tend to progress in fits and starts. Occasionally over doing things and paying for it, while other times taking care of myself, but living a non-life. It's not much of a system, but at least it's not a rut!

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A page from James David Chapman's website.   Located at: http://www.users.globalnet.co.uk/~jchap/   Site mirrored here at: http://www.j.chap.btinternet.co.uk
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