The Polio Paradox – Richard L. Bruno H.D., Ph. D. (reviewed again)

I first finished reading “The Polio Paradox” in 2002 and have always held it in high esteem. Since finishing the book a lot has changed in my life. I have trained as a hypnotherapist and used my training to help myself move from being a mobility Scooter user to being runner. I have come a long way with my M.E./Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome but there are also parts I have yet to make progress on.
After a very useful discussion about helping other ME sufferers in the 25% ME Group I found my Hypnotherapist ideas had, in the eyes of others, put me into a camp I have never associated myself with. IE one that believes ME/CFS is all in the head.
From the first time I was diagnosed by Dr Elizabeth Dowsett in 1994 I have always found her theory of M.E./C.F.S. to be quite believable and have never seen any reason to change that view.
The reason I loved this book was it backed up Dr Dowsett’s views with a different illness and lots of research.
I am currently studying the countries first degree in Clinical Hypnosis and part of this degree will require me to be more critical of research. I am not at that point in the course but I am becoming more aware of the body and am able to be more critical of psuedo-facts. In fact I believe less and less in pure fact as everything has so many perfectives. EG it could be correct to draw a tyre as a rectangle or a square.
Given my new perspective on life and ME/CFS I chose to read this book again and I am very glad I did.
It wasn’t until I was half way through the book I read my first review again. I was struck instantly by the fact that again I was wanting to discuss this book almost chapter by chapter with my partner (who is now my wife). Also I noticed my recommendation to read the ME/CFS chapter first. Since I was struggling for context so I therefore proceeded to do this. This was a great help and enhanced my understandings for the rest of the book.
Another thing I noticed was that I now loved the section I originally hated on the “Biology” of the illness. This was very useful to me.
The book is written in a very easy to read style. From an acedemic point of view I would have preferred numbered references for each point in a chapter but each chapter does at least list the references chapter by chapter so when I am wanting to looking into ME/CFS in greater detail I will have a wealth of references.
I must say I particularly liked the subsection headings. Quite often their seemed to be a certain amount of playfulness and fun in them.
The chapter I found less essential this time was the one on “The Pest House” which quoted a lot the awful things Polio patients were subjected too. I think it is quite educational so I would leave it in the book but at times I felt subjective quotes from individuals didn’t necessarily provide good science.
The chapter do provide some clues as to why Polio survivors tend to be more highly educated than the general population. This is something mirrored in ME groups hence when I first become ill the term “Yuppie flu” was still being used. The virus causing the problem didn’t pick on particular social groups. It is just that suffers became ill and people often felt they were faking tiredness etc. In order to prove they were not and that they were “normal”, the sufferers often worked harder and despite difficulty with “brain fog” and general fatigue they proved they could still pass exams and become “normal”.
This has led Dr Bruno to observer that a far great proportion of sufferers are of “Type A” personality IE hard-driving, time-conscious, driven, self-denying, perfectionist, overachieving nature.
As I mentioned this time around I was far my interested in the biology of what was happening. I was interested that Enterovirus’s can enter Neurons and damage them. That if only 40% of Neurons are left Paralysis of a limb can occur for a time but then the existing Neurons link to parts of the dead Neurons’s structures and cause recovery. The difficulty is that years later as these overworked Neurons age and are mis-used they start to fail again and then Paralysis and weakness become a problem again.
This has disturbed my sense of recovery. So has reading about the problems that I am still facing and the explanation for them. My running has currently taken a set back as I have a knee problem. At present I am having to consider if I have moved myself forward so far I am doing myself damage or whether the book is just playing with my head. As a Hypnotherapist wanting to help ME/CFS sufferers I need to get a balance on helping themselves gain the most from their lives while not encouraging them to do damage to themselves in the long term.
I am pretty disappointed that the government bodies looking into ME/CFS still don’t seem to accept a Viral Model for ME/CFS. A recent PACE study has compared Cognitive Behaviour Therapy (CBT), Graduated Exercise Therapy, adaptive pacing therapy (APT). CBT and GET were found most effective but many ME/CFS sufferers have had little improvement and even some bad effects from them.
I have discovered with my own efforts that elements of these work. I have also discovered roadblocks in recovery for which I have now been given a road map. EG My Brain fog could be caused by the brain having damaged Neurons which reduce the amount of Brain-activating Hormone ACTH released. I have not had this thought to play with before so now I can focus on suitable images to see if I can get my brain to increase it production of ACTH. If Dr Bruno is wrong about this it won’t really matter because I now have an idea of a positive image where as before I just couldn’t remember what it felt like to have a lively brain.
This book is plausible and should be considered when looking for ways to help ME/CFS sufferers.
I recommend all ME/CFS sufferers or their close partners/families read the book. It doesn’t provide the miracle cure but it does provide a way of maximising the body you have. The book recommends ensuring you get enough protein early in the day. I haven’t managed this yet but it is something to look at.

The more educated you are on the subject  the more you can educate your GP and specialist and hopefully progress research into important areas that don’t just affect CFS/ME sufferers but possibly sufferers of other illness too.

Chronic Fatigue Syndrome/ME

UPDATE 16 Oct 2009 – As I write this update the last modified date on this page is 16/5/05 and I highly doubt that was an update in page content. This page is therefore largely historical and I am quite pleased it is still here. At last ME is 80% a thing of my past. When I get chance I will write an article on my recovery but in the meantime I will mention that I have made progress by changing my thinking patterns and the use of self hypnosis. Can I recommend that once you have checked out my views here you jump over to my hypnosis website and specifically start looking at the articles in the ME/CFS section . If you are reading this in the North Essex area and know someone with ME or are a sufferer yourself please get in touch with me as I am offering free help. It is free and there are no catches. I want to help stop the unnecessary suffering and help people live fantastic lives again. I am like a new person and there is no reason other sufferers can’t recover from this very physical illness too.

I have noticed there are several pages offering advice on ME on the net. I have decided it is time for me to add to the information or lack of it by describing my case and what it feels like. This isn’t a well written page and it’s views should be taken with a pinch of salt. If you think I have it all wrong please feel free to tell me.

Intro

What is M.E.? Why do we have to start with such a damn hard question? Well lets start with my simplistic answer of what it is like having it. It is like having the flu but instead of it only lasting two weeks the aching and tiredness last for months or years. It is also like a running a marathon before you wake up in the morning and then being asked to do everything as normal when you do wake up. In my experience your strength is as good before you become ill with ME. Short term. Very Short term. That is the problem you have no endurance.

ME itself stands for Myalgic Encephalomyelitis. It is a name that started to be used in the 50’s apparently. The illness has been around a lot longer than that though. Technically it means “Inflammation of the brain and spinal cord” but I don’t think any of that is proven and it is not relevant to the symptoms. In America it tends to be called Chronic Fatigue Syndrome (CFS) which is better in that it describes how we feel better but it also describes a load of other illnesses too. Another name used is Post Viral Fatigue Syndrome (PVFS). I don’t think I have any problems with this one but I suspect there are some since ME sufferers still prefer ME. ME is now officially recognised by the World Health Organisation which is a help. In the UK a lot of doctors still don’t believe it in though and this causes problems for the suffers. The name “Yuppie Flu” which was used in Newspapers in the 80’s is also misleading.

The Symptoms

So what are the symptoms? Well in my experience if you compare any two ME suffers their descriptions will match in only 50% of the things. (No wonder doctors struggle to cure us!)

I will give you the Action For ME view of Diagnosis

Diagnosis is based on a careful history and examination and exclusion of other conditions. It can be difficult to distinguish M.E./PVFS from other forms of chronic fatigue but, for a diagnosis of M.E/PVFS to be made the following characteristic features must be present: –

abnormal fatigability: the severe reaction, sometimes delayed up to 72 hours, to either physical or mental exertion trivial compared to the patient’s previous tolerance. Patients can take days to recover. The fatigue is unlike ‘healthy’ fatigue previously experienced.

encephalitic symptoms: especially poor concentration, short term memory loss and disturbances of sensation.

variability and severity of symptoms: from day to day or within one day, sufficiently severe to reduce daily activities significantly.

duration: symptoms should be present for three months or more, unlike common post viral debility following ‘flu, glandular fever and hepatitis.

chronicity: a tendency to become chronic over months or even years. It is also important to distinguish M.E./PVFS from the fatigue associated with depression and lack of physical fitness.

How did I get ME?

I was one of the lucky ones. I had a very clean start to the illness. So ME sufferers can try and fight it for years before getting diagnosed something was wrong.

In January 1994 I was travelling to work from Ipswich to Tunbridge Wells. This is a distance almost exactly of 100 miles and I was doing it daily. I driving 25 miles to a friends house in Colchester and then getting a lift in his company car to the edge of Tunbridge Wells where he was working. I then did the 1.5miles to the office where I was working on Bicycle. It was a long day but because I wasn’t driving for 75 miles it didn’t bother me.

On 24th January 1994 I woke up feeling a bit rough but I didn’t have time to consider how well I was. I drove to my friends in Colchester and was feeling pretty bad by the time I got there. My friend said sorry he wasn’t going to work today he wasn’t well. If he had done I would have gone in but there was no way I was going alone. I might not be well enough to drive back by the end of the day. I decided to go home. My friend was horrified when I told him he thought work would think we were taking the Mickey out of them. I had made the correct decision though as I went into my usual 3 day flu cycle of Shivers and Delirium on the first night. The next day feeling a bit better. The third day thinking perhaps I ought to be back at work but being advised not to. Then on the fourth day my ex-wife became ill. I therefore booked a day off work and looked after my daughters while she recovered. On the Monday I went to work again but felt heavy legged and the early signs of my 3 day cold reappeared. The next day I had to go to the doctors and they signed me off for a week with Tonsillitis which amused me somewhat as I have had my tonsils removed.

On February 7th I had bad Diarrhea and Stomach upset. A Doctor was called out for me at 10pm. This was a different Doctor.

On 14th February I had yet another Virus and was signed off another week. I couldn’t believe this and during that week I got a bit fed up and Depressed.

On 21st February I saw yet another Doctor in the Practice (I didn’t care who saw me) She said it is all in my mind and should try going back to work on the Thursday and do short week. She also thought I was worried about journey of 100 miles each way to work. This really annoyed me so thought why wait till Thursday I will go in tomorrow and I will stay in Bed And Breakfast accommodation so that can’t be used against me. So I did just that the first day felt very drunk and heavy legged and worked
all day. My Bed and Breakfast was 200 yds from the office and by the time I got in the 2nd day I felt like I was sky diving. I didn’t feel it was safe for me to risk going home by train so I called my wife to come and fetch me from work. Curiously I can remember one of the administration assistants saying to me she had heard I had “Yuppie Flu”. I hadn’t a clue was it was. She told me someone else had had it in the office and had been off for months. I laughed and said no I haven’t got anything like that!

When I got home I saw the doctor I decided to stick with and he referred me to hospital for check ups (all negative). At this point I was told I had probably got “Whatever it is that goes under the name of Chronic Fatigue Syndrome or ME if that’s what I want to call it”. I would be better in Six months or it would be something else. Six months I could not believe it! How can they tell you are going to be ill for months! My next Sick Note from the Doctor was for 3 months. I didn’t have to see him and I didn’t have to go to work for 3 whole months. That was terrible. How the heck would I fill my time! What on earth would work think of me!

Over the next few months I found having ME like walking downstairs. I would try and maintain a certain level of light activity. This would gradually get harder and harder until I suddenly couldn’t do it any more I “crashed” and went to a new lower level of activity. I would try to maintain this new lower level and then crash I would crash again and go down another “step”.

By October 94 my ex-wife had talked me into using an Electric scoters in the town centre. Boy! Was that embarrassing. How the heck had I got to the stage of having to use a wheel chair to do my shopping! How was it I even qualified
to use one. In fact calcualting back I must have got my first Orange Disability Badge at this time. Unbelievable in serveal months I had gone from fully fit to disabled and all because of a cold! I was also delaying getting up as long as possible in order to conserve energy for the rest of the day. I tended to spend the afternoons sitting with my legs up on a chair away from my children.
My Ex-wife had seemed to suffer some kind of Post Natal Depression after Abbie was born in April 93 and she was slowly coming to the conclusion I was the cause of her problems. The fact I became ill did not help things one bit. She was having to do more and I was no use to her at all. I tried to save the marriage but eventually had to decided to let her divorce me. I therefore had a lot of stress during this early period of my illness. This is something that if possible should be avoided at all costs.

In June 1994 I had started to make one line symptoms notes and diary entries about the illness by October 1994 I was making a fuller record of my daily symptoms in a diary database on my PC. I almost never read it but I have found that when I do it is an interested look into my state of mind and life etc. I also found writing a diary a great way of relieving stress. I could write things down and look back and see if I agreed with my views in the future. Once I got E-mail I found that an even better way as I could then write something out for my records and share it with a couple of people and get feedback from them on weather I was a fool or whatever. Doing the diary/e-mail was the start of my obsession with writing reviews of Concerts and books etc. Even before ME I had a poor memory so it is nice to see what I thought about something at the time.

By February 95 I could no longer handle sitting for any length of time.

In March 95 I risked a trip to town just to see if I was kidding myself about my new level of required in activity and I was finally forced to start taking Co-proximal to reduce the discomfort in my back. I have kept on these ever since otherwise I could not do half of what I do and I would be extremely grumpy and worn out. If I decided to go out now I have also discovered I am allowed to use Ibrufen so I use that to blot my body out even more.

On the 6th April 1995 I got an appointment to see an ME specialist called Dr Elisabeth Dowsett. She worked voluntarily at a clinic once a week but had been looking into ME for years. This was an extremely helpful meeting in that it confirmed I had ME and what my plan of action should be etc.

Current Status

“So you feel tired do you?” I hear you say. “Well I feel tired too.” Really so where do you place yourself on this scale?

Percentage disability – Symptoms
0 – No symptoms
10 – Mild symptoms following physical or mental exertion
20 – Mild symptoms at rest, worsened by physical or mental exertion
30 – Mild symptoms at rest with overall functioning only 70-90% of usual

40 – Mild to moderate symptoms at rest, daily activity clearly limited

50 – Mod symptoms at rest, mod to severe symptoms following physical or mental exertion, unable to perform strenuous tasks
60 – As 50%, plus overall activity reduced to 50%- 70% of usual
70 – Severe symptoms following phys or mental exertion, 50% of usual activity overall, Mod to Severe symptoms at rest.
80 – Unable to perform strenuous tasks, rarely able to leave the house, confined to bed most of the day, mod to sever symptoms at rest
90 – Severe symptoms at rest, bed-ridden majority of the time.
100 – Severe symptoms on a continuous basis, bed-ridden, constantly

My current status is I am mainly bed bound but I find my interest in E-mail allows me to do around 2-3 hours of replying a day despite the discomfort. I always print of most of my E-mail for reading. I write answers on the paper and then type them in to save time sitting. I am in general limited on how much I can read. I decided I would finish a book that I had been reading a year and still had 60 pages to go. I did it over 2-3days reading no more than 6 pages at a time and strained my eyes muscles vertically so much that I woke in the night in total discomfort. I used to read a lot of musical mailing lists and newsgroups but I have since decided that reading books is more enjoyable. I therefore tend to use my Bath reading session for books.

By day normally starts between 6.30-7.30. I am always pretty desperate to go back to sleep by 1pm. I normally sleep for about 30-60mins and then go have a bath because in winter I get really cold and this thaws me out. It also delays my activity in the afternoon. In fact I may as well describe an average day for me.

6.30 Wake-up. Download E-mail and start printing it out.
7.30 Go and get breakfast
7.45- Watch the previous nights TV on video until at least 9.30 longer if I can stand it.
10.00 Start reading e-mail with music on at low levels.
10.30 Maybe latter start answering e-mail’s. What I don’t do goes into backlog and only gets tackled if I ever feel up to looking at it. I think it more interesting to answer current e-mail first as it is fresher. I have also discovered there is an art to managing E-mail. Friends that reply too quickly I have to let go into my backlog occasionally and only reintroduce them when I am getting low in e-mail’s.

12.00 Eat Lunch
13.00 Sleep
14.00 Bath
15.00 Watch TV
15.45 Keep watching TV. Perhaps do some jobs but not to much. See my children if it is one of their two visits a week.
17.30 Dinner
18.00 Pick up and answer E-mail till 7 or 7.30 then watch TV. I have recently got an Electric Saxophone. It is fact called Yamaha WX5 Midi Wind Controller. I used to play Sax and Clarinet as a child and have wanted an electric one ever since I discovered them because I am a hopeless musician and don’t like inflicting my noise on others. I play 30mins to an hour an night (when I am not too wrecked!). I do this laid on the bed. I can’t waste energy sitting for it. It absolutely messes my brain up. It is totally
wrecked for an hour to 2 hrs afterwards. It is not at all advisable to me to risk practising earlier in the day because of this. I therefore tend to practise when there is nothing on TV or something that is light on the brain like a soap. I used to not be able to multi-task and I still think that is pretty much that case but I do seem to manage a little double tasking in this case. And sometimes with scanning my e-mail on paper too.
22.00 Sleep

Maintaining this level of e-mail is hard as my fingers get worn out. At times in the past I have had to resort to using pencils to type. I also suffer with light. I don’t seem to be like other people in this respect as it is contrasts in light that get me. Artificial light sources have to be out of my eye sight. I often have to shut the curtains or reduce my angle on the window because the light entering my bedroom via the window is too strong compared with the light in the rest of the room. People just don’t understand this. I also always have to play with the brightness and contrast on my TV set.

I used to suffer with noise but since I moved back to my parents I have found my toleration for it has increased a bit. When I am crashed though I still jump and can’t stand loud noise. I am now pretty much an expert on when I am going to crash and how to avoid it in the short term. If I do misjudge this and crash for no real reason I find these crashes are the worst that can last for over a week and drive me nuts. Lets face it I do very little anyway so cutting back and still filling
my time is even harder.

I consider myself as having been on the same level since I became mainly bed bound. Looking back at my diary it is conceivable that I might have improved slightly. I don’t believe this myself. To me this is down to the fact I am not being worn out by playing with my children. I know this looks bad but I feel sure it is true. When I was still with my Ex-wife I played with them for 1/2-3/4hr morning and night. I was crashing all the time then. I could never recover. When I moved to my parents I saw my children 3 times a week for 2.5hrs and I crashed a fair bit. It then got cut down to twice a week because Zoe had to go to school one of the times and wanted to miss it because Abbie was still seeing me and it was therefore unfair. (At the time it was actually quite handy having Abbie alone one session as Zoe being Older and therefore able to do more kind of dominated the computer and my time. It allowed me to teach Abbie a few things without having to worry what Zoe was doing. That is something else actually. I found it best to encourage them to play separately one on the bed with me the other on the Computer. That way they didn’t fight as much and I could be more one on one with the one on the bed. If they both did the same thing they would both talk at once and I really struggled. Anyway ..)

Moving down to two sessions a week has been perfect. I can now do slightly more activity to keep me sane and be in a fit state to play with the the best I can and I am not crashing unless I go to a concert or some other extreme activity such as deciding to write an ME page for my web site. I will end up doing this all in one session so that I can get it down. Suffer for it and get recovered. If I do it over several days I will never switch off from it and it will become a bind. I have started the page this morning because it has been in my mind to do for some weeks and my E-mail has been down overnight. I also am not seeing my daughters for another few days so I don’t have to worry about being tired for a few days.

Just to prove my point I have had my lunch and been trying to have my nap which I need badly but I lay there with my eyes shut etc and my brain is ticking over thing about everything I should write on this page.

I am a Computer Programmer or should be. I occasionally have decided to write a program on my PC. This is far to addictive for me. I could set myself 1hr to do a job but if the job is not finished I will never switch off from it. Therefore is no way I can be tempted by programming an hour a day for a week or something. It is far better to do it for 7 hrs in one session and suffer for it. I recently bought a Psion Hand held computer and that can be programmed. I started to write a game on it. I was doing it is stages so that I could switch off but I still ended up attempting too much in a week and on one particular problem I ended up working out
it until 3am because it was annoying me and if I stopped I would get another idea as to what I was doing wrong.

From Mid 94 onward I have found I need to sit in chairs with my legs stretched out in front of me. As I sit here typing this I have my feet up on my desk because that is the most comfortable method. I also have a back cushion on my chair to support my lower back. I have never worked out with I like it or not. It is always uncomfortable. However I occasionally go to London on train and I there have been several times I have asked for someone’s empty drink bottle so that I can lean on
it. I have also used jumpers and coats etc.

To show you how ME affects the brain how hard do you think it is to write down an address someone is reading to you on an average day when you are not feeling crashed? It is amazingly hard for me. I find it a really hard process to convert the sound of letter into the mental image of a letter and then get my hand to write out that letter. And it really frustrates me when people say “double f” or something. “Double?, Double? What letter is that. Oh yes what is the next letter.” It takes a good second of hard thought to convert each sound to a written imagine. I have also noticed if I am typing out E-mail responses for an hour or more and the phone rings it is really hard to get my brain to switch back to vocalising my thoughts instead of typing them. It is as though it gets into the habit of working certain parts of itself and switches off all the lights in the unused areas.

It is extremely hard to describe how you feel when you are crashed because your brain doesn’t work so you don’t know how to explain how you feel. One thing I have noticed several times is I become “fragile”. Sensitive to sound and light. I am often feel my eyes are puffed up and I am bug eyed in appearence. I feel shakey. I bump into more things. Over activity often gives me a sore throat. It is one of the few occasions when my brain is happy to do nothing. I am often rather cuddly in this case.
I have also noticed that there are occasions when I have felt depressed during a crash. Now I have tried to explain this in the past and never succeeded so I don’t expect to succeed now. I am not feeling depressed because I am crashed. I do occasionally get fed up with long crashes but that is not what I mean. I go into a crashed state and I find my brain seems to be lacking something and it feels depressed separately from how my mood is. In a crashed state I can be watching TV and there will be an emotional moments e.g. two friends kissing, a child dying, people making up and I have to stop myself from crying. My face starts to crack.
Anyone that knows me no I show no sign of depression at all. Some people with ME do and it is to be expected with any debilitating illness. I have had a fixed plan for recovery since I saw Dr Dowsett and am very positive. I would for instance rather have ME than Cancer. I view the use of Electric Scooter in Town as going for a ride on a Go-Cart. I view using a wheelchair
as a visit into the land of the disabled. Aren’t I lucky that I don’t have to be in it all the time.

The hardest thing with ME is learning to hold back. I live a cross the road from a Park. I see people go running in it. I used to do that and I want to go and join them. I want to do this and I want to do that. I know what is possible and I know how far I can push the limit. Because I used to run long distances I have always been good at endurance. I can switch off how my body is feeling and keep my brain occupied with something else. With my daily load of activities I always feel I am pushing the limits of what I can do. I am on the knifes edge if not hanging on the wrong side of it by my hands. I firmly believe that for me to recover I should keep as active and happy as possible. I base my day around doing things that keep my brain occupied and use as little energy as possible. If I do things that I don’t enjoy they are ten times as hard to do as things I do enjoy.
Is this because I am selfish? No it is because I am in pain and tired. If my parents go on holiday I have to heat my own meals. I also tend to use the stairs 6 times a day instead of the current 4. I really notice the difference in my fatigue levels. The 20 minutes waiting for potatoes to boil are a real problem. Do I lay on the kitchen floor for the time? Continue the process of loading or unloading the dishwasher? Do I risk the gas going out or something boiling over and go and lay on the settee for a while? It’s a problem. I almost never do the later as it is 20 paces away and therefore more walking. If mum and dad came back early they would have a fit if they saw the state of the house. I have things lined up and the top and bottom of the steps. Things lined up to be taken to the bin if I should ever need to go that way and other labour saving things that make the place look untidy.

If I am on a burn out day i.e. I am pretending to be normal for the day and don’t mind the consequences. It is extremely dangerous for me to stop. E.g. During the summer I like to take my children out to a Bouncy castle play area type place. This is good fun. If join them walking around after an hour I would be really struggling to keep going. If I stopped and rested that would be it. I would never get going again for the rest of the session. If I continue to push on I can normally make it. I discovered this when I was running once when well. I decided to follow a country footpath and see where it came out and then run home. I had done about 13 miles and was 3 miles from home and noticed my shoelace was undone. I ran with it for a while until I was running downhill and then did it up. I was disgusted to find no matter how hard I pushed myself I could not get back into running again and had to walk all the way home very annoyed with myself.

I do have a great capacity to endure my body. My girlfriend visited during the summer and we did an awful lot. I was able to do it because I was supermotiated and supertired. Everyday I woke up and wanted to get on with the day i.e. get up and get out. I needed the distraction. If I did a day with loads of walking I had to try and take it easier the next day on a coach trip or a light day. As long as she was around I was able to cope. She wanted to go shopping in London and there didn’t seem any point in my hindering her so I had a day alone by myself. This was an extremely depressing day and totally pointless from my ME point of view. OK I did get some benefit from resting but not a lot and in the mean time I was feeling my body and therefore sorry for myself all day. It took a good week after she left to even start to feel normal again. Even then the slightest over exertion and I was crashed. It took weeks for me to stablise and get back to more normal level of activity again. Physiotherapists and concerned onlookers would say isn’t great you did so much while she was here. You must be getting better. It was not the case at all. I was on two lots of painkillers at maximum and determined. My body at the end of it was well into it’s reserves. Certain Doctors think
all that exercise should have made me better able to cope with my daily load but in fact it reduced it.

Another point I feel I should mention is I can agree to go out for the day without out a wheelchair and know that I might walk a mile or something ridiculous. (Remember I feel the distance after 20 yds and that my legs feel like I am walking on pins. My Shins specifically.). If halfway through the day someone I am with wonders away in what I perceive to be the wrong direction or unnecessarily and I have to follow to find out why I get extremely frustrated and begrudge every single step. I have no object
to doing it if is is necessary to what we are doing or even if we are lost. If it is unnecessary though it is unnecessary and my energy calculator immediately switches back on and says “Look stupid you are hurting your body why?”. To the outsider I am walking 1mile what difference does 20 steps make. It doesn’t make sense for me to be annoyed about it. What they don’t appreciate is that every one of those steps is pure determination and when you don’t have a reason for continuing that level of determination you revert to normal. How would you feel if you had just ran a long distance race and then someone said to you “Now run over there because I am telling you to”

Perhaps it is time to explain the Energy Bank account …

Aggressive Rest Therapy Or an Analogy on who ME works!

An analogy – My attempt (It’s actually partly taken from someone else’s ME page) to explain Aggressive Rest Therapy

1. We all have an energy “bank” account.

2. “Normal” people have a “normal” account. They deposit 7-8 hours of rest, and they can withdraw 16 or so hours of energy.

3. People with ME don’t have “normal” bank accounts. Our banks have very high service charges.

4. We must deposit more rest to be able to withdraw less energy.

5. We get charged a BIG service charge just for having an account.

6. We get charged a BIG service charge whenever we make an energy withdrawal.

7. We get charged a BIG service charge whenever we make an energy deposit.

It’s not fair…not a bit. But that’s life with ME

I had heard all of this before except for 7 the making of the deposit charge. That is definitely true. Trying to rest up in preparation for a know big exertion is almost pointless. Certainly avoid doing too much before it but resting completely doesn’t achieve a lot except drive you mad and make you worried about the exertion coming up! It is like filling an upside down pepper pot through a hole in the bottom of the pot. It is possible to get the water to the top if the water in is faster than the water out but as soon as you turn the water off it continues to drain away.

What is my philosophy on how to recover?

To be honest I have had ME 6 years now and I have a gut feeling this is it for me. I live in hope I am wrong but I have decided to change my life and not take the advice I was given in the early years of my illness quite so much.

Basically I follow the advice I was given my Dr Dowsett in her chat with me and the ME in a Nutshell leaflet.

My Life goal is to be happy (but not at anyone else’s expense) and to keep happy I try and remain sane while listening to my body.

When Dr Dowsett was describing the “How Do Viruses Evade The Immune System?” section of ME in a Nutshell, she said that perhaps ME gets “cured” because one day the virus mutates back into a form the body has previously dealt with and it is therefore able to get it under control again. This seems logical to me. General medicine has nothing to offer ME suffers at present and I have tried several alternative therapies in my time.

Therefore I am keeping happy and sane and waiting for enough time to have passed for my body to beat the illness.

Because I have had the illness a long time I have started to drop the idea of listening to my body. If there is a concert or something I am interested in going to I will now force myself to go. Before it was only essential concerts I would go to. If I suffer for it I don’t mind as much as long as I thought it was worth it before going. I should point out there is absolutely no reason why I would go down the pub for a drink. It is just not worth the energy and suffering. It has to be something special to me like going to a concert or taking my girlfriend out to make it worthwhile.
Even then I have been to some concerts that I wasn’t that excited by and felt my back all the way though. It is really annoying.

If an ME suffer can save energy doing something do it. Conserve every single drop of it for something you enjoy. I type up interviews for my Praying Mantis Web Pages. I used to do it in one day with the PC moved to my bed. I often wondered weather a laptop computer would be better but there is still the weight on the legs as a problem. Or twisting if it is on the bed. I recently got a Phillips Nino which was a handheld PC without a keyboard. I discovered this was great. It was able to read my handwriting and everything. It was slow though. I am quicker with a keyboard. A friend had a Psion handheld computer and the 2nd hand price wasn’t too bad and so I admitted I made the mistake with the Nino and got one. It has been a dream. It is not designed to sit on your chest and be typed in but it is light. I tend to have to prop the use up on a book as a wedge so I can see it laid down but at least it allows me to type while laid down. I have noticed my back hurts more the night after but I can now play games
and write concert reviews, notes and set alarms for activities and TV etc. I would not be without it now. I recommend it for any ME suffer.

Alternative Therapies

Because conventional medicine is not much help ME suffers get desperate and they are rip to get ripped off by alternative medicine. Some people do recover. They might even recover because of the current therapy they are trying if so great. I have tried several things and none have worked for me. It is just tipping money down the drain in my view. People accuse me of being pessimistic if I say “No I don’t want to run round the garden naked and rub my nose on a tree to see if that cures my ME”. It has taken me a long, long time to work out a reason to explain my dislike of these things. Then when my parents were suggesting something one day it occurred to me to ask them why don’t they “do the National lottery”? It’s because the odds of winning the top prize are about 14,000,000 to 1 and they don’t think they are good enough odds. That is exactly what I feel about Alternative Medicine. Yes there is a small chance I am rejecting some marvelous cure but if it is that good I think everyone with ME will discover it and tell fellow suffers it is worth it. Another consideration is there are lots of type of ME. Some suffers are allergic to certain types of food. I am not sure that they are my type of ME and I don’t think things that worked for them are likely to help me.

Aromatherapy Massage – This is one of the first things I tried. My legs were always cramping (of course they were I was too active on them) and my little brother decided to give me two treatments as a birthday present. Well it is was nice and relaxing and I felt my legs loosen but by the time the rest of my body was done they had started cramping again. I highly recommend it with your partner though.

Holistic healing – I didn’t see the point of a second massage and by brother’s friend also did healing. If you slowly bring your hands together from a distance as some point you might find you feel a slight resistance to bringing your hands in closer. That is your aura. A healer massages this and channels energy back into your aura when you are feeling low. I thought “Oh what the heck I will give it a go”. I got no noticeable effect so I didn’t bother again.

Homeopathy – From October 95 to April 96 I tried Homeopathy. I was given several different pills. Non seem to have any positive effect. In my diary I did querying if I was was feeling rougher because of it but I never decided.

Intra – My parents went on holiday and meet some ex-ME suffer that recovered on Intra. They decided I might as well try it. I didn’t have to pay so I didn’t mind. I noticed no effects.

Graduated Exercises – In the first quarter of 97 I got to see a physiotherapist that dealt with ME cases and had a 100% success rate (she claimed). I was started with walking for 50meters every day. I was to build it up to 75m after a few days and 100m after a few more etc. I was only on two visits a week from my daughters at this point so I was not too over-active. I was crashing and having to take the increases a lot more slowly than the Physiotherapist wanted me to. Every time I got to about 2-3mins walking day it was just Crash, crash, crash. I couldn’t do the exercises and my normal daily/weekly pattern. I went back down and rebuilt up again a couple of times and was eventually told she could do nothing for me.

Chinese Herbal Medicine – In August and September 1998 I gave Chinese Herbal Medicine ago. The Doctor didn’t promise results but he was surprised after 8 weeks when he had got nowhere. I am sure he said I was his first failure. This was very expensive 250ukp over 8 weeks. Other customers seemed to swear by the medicine.

St John’s Wort and Multi-vitamins – In April 99 I hadn’t tried anything for a while so I decided to give these ago. No noticeable effects.

Prozac (Not an Alternative therapy in the conventional sense but it is as far as ME is concerned to me) – At the end of 2000 I decided I had been to see to many gig and that is was taking too much out of me. I was feeling like I wasn’t getting anything done at home on my PC etc. I do need to feel I am getting somethings done and that I am organised so I took the decision to not go to the less essential gigs and to try and buckle down more to a proper routine again. In Jan 2001 I was therefore feeling a bit low. I wasn’t my normal happy self and I decided I would go and have a word with my GP. We decided I was just frustrated but since Anti-depressents work for 20% of the cases with ME I would give them a go again. The last time I had tried them was 94/5 time.
I had reacted badly to them so it was suggested I go for Prozac this time. I also decided I would make sure I would give them a longer trial period this time. The previous time I had suffered a load of side effects and only lasted a week or so.

The first week on Prozac I had a cold so I was a bit off my head and didn’t know weather it was the cold or the Prozac. The 2nd week I knew it was the Prozac. By about day 10 was I really wanting to get off them again but I gritted my teeth and decided to get through the packet of 15 I was on. My main problems were my head was completely gone. I just could not concentrate in the ways I normally can. My legs and muscles in general were cramping a lot more and I was very fidgety. I had a dry mouth and I was having to drink even more water than I normally do. (I tend to drink a lot anyway). It also was wrecking my sleep pattern. I was really struggling to keep a sleep a night. I am lucky that ME doesn’t affect my Sleep too much so this was particularly annoying. On the 15th day I therefore went back to my GP and we agreed there was no point in me continuing with them. I hadn’t really had long enough to get the full proper effects of them but there was no point if they were making me feel worse. Having tried them twice I now feel I can say for sure that Anti-depressents aren’t the solution in my case.

Companionship

If you can’t get out to meet people you might think it is very hard to find companionship. Well the Internet is a great way to get to meet people. They might be on the wrong continent but the can still support you and you them. Also international calls are extremely cheap now. I pay just 3p a minute from the BT network for calls to America with a company called One.Tel (0800 092 1878). Calls are charged a minute and the is no monthly fee or anything. I am sure if I needed to I would be able to find ways of finding someone local to my area but I have no need to thankfully.

Final thoughts

I am not at all religious (although I love talking to people that are to find out why they are) however Rick Wakeman used the following prayer on one of his albums and to close his autobiography “Say Yes”. He says it is attributed to an unknown Confederate soldier. Whoever wrote it I think it is a great bit of text and may help some people come to terms with their ME and lives..

I asked for strength that I might achieve;
I was made weak that I might learn humbly to obey.

I asked for health that I might do greater things;
I was given infirmity that I might do better things.

I asked for riches that I might be happy;
I was given poverty that I might be wise.

I asked for power that I might have the praise of men;
I was given weakness that I might feel the need of God.

I asked for all things that I might enjoy life;
I was given life that. I might enjoy all things.

I got nothing that I had asked for;
But everything I had hoped for.

Almost despite myself my unspoken prayers were answered;
I am, among all men, most richly blessed.

The Polio Paradox – Richard L. Bruno H.D., Ph. D.

I read this book in November 2002 because it was recommend by the specialist that originally diagnosed my ME, Dr Elizabeth Dowsett.

She actually gives the book a recommendation on the back cover. I was diagnosed in 1994 and have fairly religiously stuck to her advice but there was only so much information that could be passed to me in a consultation.

Reading this book really felt like a detailed explanation of everything I was told. It gave me a much greater understanding of my illness and a valuable source for of reference for discussions with illness disbelievers.

You can read my review of the book here. The one line summary is if you have ME buy this book in preference to all the alternative therapies. This book should be your blueprint for life!

Links For ME sites

Action For ME is the UK Charity I currently belong to and seems very into alternative Therapies.

ME Association is another UK Charity I used to belong to and seems more cautious about what it recommends. I am not sure I have any preference as to which is best. I hadn’t been in a support group for a long while but someone suggested I should be so that the charities can form pressure groups to represent suffers.

Dr Dowsett on ME and Chronic Fatigue Syndrome

When I saw Dr Dowsett In September 1994 she gave me a
document call
"ME In a Nutshell" which is on the official part of my site. This
page is just here for those in the know. I had reason to consult Dr Dowsett
by phone and she was kind enough to send me these new notes. I think they are
fairly self-explanatory so I have OCR’ed them. I there were a few pictures
but I have not included them since I am not sure Dr Dowsett would want it on
the Internet. I forgot to ask. I will therefore leave it as is for now
and see what happens. If you have any questions please ask me.

PATIENT’S INFORMATION SHEET

THE ENIGMA AND THE PARADOX OF ME

A. WHAT IS ME/CFS?:

It is a disorder initiated by a common virus infection of
which (rather like influenza) several strains circulate annually in the general
population giving rise to sporadic cases or to local epidemics and world-wide
pandemics at 10-20 year intervals. Although clusters of infection have always
been recognised in families, schools and Health Care institutions, the
vast majority of cases (especially in the very young) are symptom free.(1, 2)

B IS IT A NEW DISEASE?: (1, 2, 3, 4)

No, it is probably as old as the human race but, in communities
living in temperate climates who enjoy high standards of housing and public
sanitation, awareness has been raised by a striking new phenomenon of the 20th
century – major epidemics of poliomyelitis (formerly a rare disease of
early childhood) followed sequentially, seasonally and geographically by a parallel
increase in ME/CFS (formerly considered to be an “atypical” or non paralytic
form of poliomyelitis).

C IS THERE ANY PROOF THAT ME/CFS IS BECOMING MORE COMMON? (3,4,5)

Undoubtedly! – between 1934 and the decline of polio following
immunisation in the early 1960’s, 38 epidemics of ME/CFS were clearly recorded
(in Northern parts of America, Canada, Europe and in southern areas of Africa,
Australia and other well developed countries with cool/temperate climates).
Since that time, outbreaks of ME/CFS have continued unabated in these areas
and have also been documented from New Zealand Japan and China. No government
has yet adequately funded a major demographic survey of the affected population
but individual studies estimate some 5 million cases between North America,
Europe and Australasia while approximately’/2 million have been reliably diagnosed
in tile UK (where a study of 360,351 members of the school population indicates
a prevalence of 70/100,000 in pupils and 500/100,000 in staff). (6.7)

D THE PARADOX AND THE ENIGMA OF ME:

Why is it that ME/CFS (like poliomyelitis) becomes more
rather than less common in communities with access to good housing, clean running
water and the high standards of sanitation which first became universally available
in the 20th century? Both disabilities are triggered by related viruses which
are finely adjusted to harmless multiplication in the juvenile respiratory and
intestinal tracts of humans.(7) This mutually beneficial adaptation between
virus and host immune system operates to ensure life-long natural immunisation
during the period between weaning from maternal antibodies in breast milk and
the onset of puberty. A major hormonal disturbance (with gradual onset from
7 years of age) begins to change the host’s immune T1/T2 orientation causing
a breakdown in host-virus adaptation. The resulting inflammatory immune response
is more severe and more chronic in pubertal females, leading to an increase
in the female to male prevalence of ME/CFS from approximate unity to 3F:1M during
the childbearing years. (8) Thus, it is the reflection of a high standard
of hygiene
(blocking the natural circulation of these viruses via the respiratory
or faecal-oral routes of infection during early childhood) rather than any
genetic mutation in the viruses concerned, that leads to the paradox of “diseases
of affluence” which are artificially postponed until adult life.(1)

E. WHAT ARE THE MAIN CLINICAL AND DIAGNOSTIC FEATURES OF ME/CFS?

      1. CLASSIFICATION: ME/CFS is a multisystem syndrome (group of related symptoms)
      with variable involvement of cardiac and skeletal muscle, liver, lymphoid
      and endocrine organs but neurological dysfunction is essential
      for diagnosis.
      The condition is therefore classified as a neurological
      disease under the World Health Organisation international classification of
      diseases (ICD 10).
      2. ONSET, PRODROMAL ILLNESS AND PROGRESSION TO CHRONICITY (3,4,9) In over
      60% of cases the illness is triggered by a short respiratory/gastrointestinal
      infection characterised by malaise, headache, dizziness, nausea and muscle
      pain with or without glandular enlargement, but otherwise indistinguishable
      from other ‘flu like or gastric upsets. A more dramatic onset (following viral
      meningitis, myocarditis or middle ear infection, for example) is also recognised,
      but a trivial illness is often forgotten. In the majority of cases the infection
      terminates here. In others, after a variable interval, a systemic disease
      involving many organ systems but with major brain dysfunction, develops.
      This post-encephalitic process miry also resolve, but other patients go on
      to acquire the classical symptoms of ME/CFS in which chronic low grade brain
      dysfunction combined with viral persistence leads to loss of bodily homoeostatis
      (the inability of the brain to function adequately in reception, storage and
      retrieval of information, thus preventing the major organs of the body from
      making a smooth programmed response).

      3. DIAGNOSIS: ME/CFS has, therefore, a very distinctive and clearly recognisable
      symptom pattern which is present to a varying degree in all patients and which
      clearly differentiates it from other so-called ”fatigue states”, Virtually
      all the cardinal symptoms of this illness can be demonstrated in a GP surgery,
      if supplemented by a detailed history and a well kept daily record since the
      onset of the illness, of the hours in which the patient is able to maintain
      activity, (as opposed to those spent sleeping/resting), A thorough physical
      examination is best carried out by a doctor familiar with the patient’s previous
      health, work or school record and family circumstances and who is well informed
      about ME/CFS, particularly if similar patients have been seen in the practice.
      Supplementary evidence of, organic disease, whether available from simple
      laboratory tests carried out locally (eg. to exclude other illness)
      or from more sophisticated and expensive research procedures,(10) is not,
      as yet, considered diagnostic or confirmative as it is not invariably
      present in such a fluctuating illness.

     

    4. SYMPTOMS: The most characteristic and disabling symptom, of ME/CFS include:

i) Episodic Post Exertional Weakness and Malaise: These episodes
are commonly provoked by physical or mental over exertion during
periods of apparent well being. After a variable interval, a sense of weakness
and impending collapse develops, when the patient needs to lie down. This
can last for 1-7 days after the triggering event – a fact constantly overlooked
in “assessment tests” or questions to ascertain the patient’s exercise capacity
without reference to subsequent debility. (4)

ii) Sleep and Temperature Disturbance: This represents a reversal
of the normal daily sleep/wake and temperature rhythm, causing difficulty
in keeping awake and attentive in conventional daytime hours, but with a
“window” of energy somewhere within the 24 hours cycle when the subject
can take advantage of recreation or study. A 24 hour temperature chart can
demonstrate inversion of normal night and daytime readings which, if taken
in conjunction with a daily activity/rest record, provides a valuable guide
to patients and doctors of energy fluctuations and the need to plan activities
within the capacity available at any particular time.

iii) Pain and Tactile Hypersensitivity: Complaints of incapacitating
pain in almost any part of the body are common. However, local abnormalities
may not be found, since the majority of these abnormal sensations reflect
central nervous system dysfunction. They may include headaches, muscle and
joint pain (without inflammation) recurrent sore or “dry” throat, tender
lymph glands, and extreme sensitivity to touch, vibration, light, noise,
taste, smell, heat and cold.

v) Cardiovascular Symptoms (11) Disturbances of the autonomic nervous
system include rapid or irregular pulse rate and a tendency for the blood
pressure to fall in the upright position, leading to inefficient
distribution of blood among vital organs. Such irregularities of the circulation
are associated with sudden faintness on standing or sitting upright and
with characteristic attacks of facial pallor or flushing as well as with
coldness of the limbs.

v) Digestive Disturbances: These include irritable bowel symptoms,
constipation/diarrhoea, persistent nausea and difficulty in swallowing which,
if added to distortions of taste and smell, may lead to serious appetite
and nutritional disturbance.

i) Endocrine Dysfunction: Owing to metabolic disturbance of the
hypothalamus (the mid-brain control centre for endocrine function) patients
with ME/CFS have a greater than normal risk of thyroid, pancreatic, adrenal,
ovarian and other endocrine gland dysfunctions. The most common endocrine
problems are associated with failure of the hypothalamic/pituitary/adrenal
response to stress (12) and a tendency to insulin resistance (causing episodes
of low blood sugar levels in previously healthy individuals and “brittle
diabetes” in diabetic patients, already stabilised on insulin) This underlines
the importance of regular meals (including breakfast!) and adequate carbohydrate
intake for all sufferers.

vii) Emotional Control(13). While this is notoriously variable in
adolescents, patients of all ages experience sudden mood swings and additional
problems often ascribed to “panic attacks” or agoraphobia when exposed to
brightly lit noisy and confusing open spaces such as supermarkets and canteens.
These sensations arise from incoordination of mid brain nerve networks (eg
the limbic system). Disbelieving family members or colleagues must be firmly
assured of the organic cause of these attacks

viii) Cognitive and Associated Neurological Disturbance: (14) This
can be profound and may include reduced attention span, verbal and mathematical
difficulties and failure of short term memory; problems with balance, fine
motor control, tactile performance, impaired perception of space and shape;
disturbance of vision, hearing and voice production. Many of these problems
also reflect subtle changes in mid brain nerve connections rather than failure
of individual sense organs.

ix) A Prolonged Relapsing Course (4 ) This is one of the main distinguishing
features of the illness in comparison with other “fatigue states” and is
characterised by a series of relapses and remissions over months or years
with variations in symptom patterns and recurrence of early features such
as inflamed throat and glandular enlargement, in some patients.

F. UNDERSTANDING THE NATURE OF BRAIN DYSFUNCTION IN ME/CFS

Some 20 years ago, studies of the electrical activity of the brain in ME/CFS
indicated abnormal slow wave patterns and unequal activity between the 2 sides
of the brain in areas associated with memory. interpretation of speech and sound,
motor control, visuospatial discrimination and other cognitive features characteristic
of the illness. However, within the past 15 years more sophisticated methods
of measuring brain activity using radioactive tracers to determine metabolism
and glucose utilisation (SPECT and PET scans)(10) have also disclosed fluctuating
metabolic activity in the mid brain and brain stem.

This is an area which encompasses the major homoeostatic nerve
centres of the body, controlling daily cycles of activity, sleep, hormone output,
fluid balance, cardiovascular regulation, motor, sensory and pain control –
all the vital nerve networks which maintain life! The fluctuating metabolic
activity in this area readily explains the many symptoms of ME/CFS from episodic
weakness to “panic attacks” – but serial SPECT scans which may indicate metabolic
improvement over time, provide an impetus for correct management to encourage
stabilisation of the illness in all grades of severity. Patients should therefore
retain their ambitions, even if in a modified form, and never give up hope of
stabilisation at some useful level of activity. To this end, they should record
all symptoms (however bizarre they may seem to those who lack understanding),
for this vital information could assist further research into the organic basis,
of brain dysfunction in ME/CFS!

G. MEDICAL MANAGEMENT

There being, as yet, no specific medical treatment for ME/CFS,
the general principles of management remain as follows:

      (1) AT THE ONSET OF THE ILLNESS OR IN SEVERELY AFFECTED PATIENTS: removal
      from all stress and additional exposure to infection
      together with a sufficient
      period of rest and convalescence for the illness to stabilise, is recommended.
      Early signs of stabilisation may be recognised by a slight improvement in
      memory or an increase in the active versus non active energy ratio
      over 24 hours.

     

    (2) CONSERVATION OF ENERGY: This is the first and most important principle
    of management
    without which further symptomatic or experimental drug
    treatment cannot be expected to succeed:

      a) Because most sufferers from ME/CFS are already operating at or near their
      maximum energy capacity while the decrease in brain metabolism following physical
      or mental over exertion leads to delayed recovery and relapse.
      b) Because resting energy expenditure is high in ME/CFS patients(15)
      which means that the energy available for physical activity is being
      diverted to fulfil this increased requirement.

     

    c) Because in some patients, there are additional metabolic defects in
    skeletal muscle leading to early lactic acidosis and increased pain and
    weakness, following exercise. (16)

      (3) REDUCTION OF STRESS: This is best managed from the start by accepting
      that the illness may be long lasting and require a change in life style commensurate
      with the known reduction in hypothalamic/pituitary, adrenal response to stress
      and the resulting risk of relapse. Support from friends, families, social
      and financial services should be sought from an early stage but provision
      for recreation, holidays, and interesting hobbies is an essential strategy
      for stress reduction.

     

    4) SIMPLIFICATION OF WORK. (a) For the housebound the aim must be
    to retain independence as far as possible by considering financial aid for
    domestic care and house conversion, and for home tuition or training to
    facilitate paid work at home in the future. (b) For those whose illness
    has
    stabilised – it is essential to organise a gradual return
    to education, training or work after checking provision for mobility, modified
    time table, exam concessions, and part or flexitime working. (c ) For
    those fit enough to work
    or study full time – a choice needs
    to be made of a suitable career, without undue exposure to stress, compulsary
    immunisations, infection, unsocial hours, difficult travel or environmental
    requirements. A graded career progression, without exam pressure and with
    facilities for, refreshment breaks and adequate holidays is desirable! NB.
    An initial period of voluntary work, when exercise and stress capacity can
    be tested, ‘should be considered (see Dr David Bell’s “All-Work-Test”, below!)(17)

H. WHICH PEOPLE ARE MOST AT RISK OF ME/CFS

Exposure to infection is the main factor. Occupational
risks in Teaching, Health Care and paramedical professions are at least 5 times
higher than in similarly stressful jobs, where employees are not exposed to
infection. (7) The incidence of ME/CFS is also high in parents or carers of
young children, those obliged to receive multiple immunisations for travel,
as well as those engaged in sewage, refuse disposal and water industries and
participants in recreational water sports. The peak age of onset in both sexes
is between 30 and 40 years with a secondary peak at puberty (most marked in
females). As in the case of polio, schools appear to be central to amplification
and dissemination of infection to the local community. (6)

I. PROGRESS DEPENDS ON:
(a) The activity of the patient’s immune system (prior contact
and adaptation to the infection in childhood may ensure a trouble free host/virus
relationship, while youth often appears to be an advantage). (b) The tendency
of any
particular strain of virus to induce serious complications (eg
cardiac). (c) The age, gender and domestic/occupational circumstances of
the patient
. (d) Genetic factors, (as yet undetermined) are probably
less important than environmental factors such as common exposure
to infection. (e) Early diagnosis and appropriate advice on management
will ensure medical, domestic, educational and occupational support from
the start.

J. RELAPSES MAY BE ASSOCIATED WITH (1):

(a) Immuno suppressive events such as concurrent infection
with other microbes, immunisation, steroid or cytoxic therapy. NB smoking reduces
local mucosal immunity (b) Hormone disturbance, including puberty, menstruation,
pregnancy but following the menopause, new onset of illness in females
falls sharply. (c) Mental or physical stress arising from head injury, whiplash,
surgery, malnutrition, climatic change, domestic problems, litigation, social
security assessments etc.. (d) Exposure to drugs which are psychoactive or vasoactive
including alcohol, anti-depressants or recreational substances and to neurotoxins,
pesticides and drugs which interfere with specific neuro transmitters (eg acetylcholine).

K. CHILDREN AND ADOLESCENTS(6)

Suffer more severely than adults from sleep and learning difficulties,
weight, appetite and mood control It is essential that doctors and parents should
liaise from the onset with school and other professional staff to minimise stress
and contact with school infections by ensuring adequate sick leave. Home tuition,
modification of class work and examination concessions must also be considered
as educational deficits can be long lasting, especially in the case of young
children, where they may lead to permanent language disability.

L. PROGNOSIS

This depends not only on the factors mentioned above but also
on the knowledge and determination of the individual patient to use the energy
available wisely. Experience gained in the rehabilitation of patients suffering
from the post polio syndrome in the USA (a condition clinically similar to ME/CFS)
indicate that once the principle of energy conservation, within individual limits,
has been accepted by the patients themselves, only 10% fail to stabilise.(18.)

APPENDIX(17)

Dr David Bell’s “ALL WORK TEST” – “No young person with ME/CFS should
be considered fit to resume school, college or work, unless they can first survive
3 hours in a Shopping Mall!”

E.G. Dowsett MB ChB. Dip. Bact.
Honorary Consultant Microbiologist
47 Drewsteignton, Shoeburyness, Essex SS3 8BA
(© Revised December 1998)

References:

(1) DOWSETT. EG, Human Enteroviral Infections, Journal of Hospital Infection.
1988; 11 : 103-115

(2) ACHESON ED, The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis,
Iceland Disease and Epidemic Neuro- American Journal of Medicine. 1959; 26 : 569-595

(3) HYDE BM, GOLDSTEIN J, LEVINE P. eds. The Clinical and Scientific
Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ottawa, Ontario,
Canada: the Nightingale Research Foundation. 1992 (Held in Library of the Royal
Society of Medicine, 1 Wimpole Street, London W1 M 8AE)

(4) RAMSAY AM. Myalgic Encephalomyelitis and Post Viral Fatigue states – The Saga
of The Royal Free Disease. 1988 *2nd Edition). 1988 London: GOWER Press (Obtainable
from the ME Association, 4 Corringham Road, Stanford-le-Hope, Essex SS17 OAH and
from The Royal Society of Medicine Library)

(5) BEHAN PO, BEHAN WMH, Epidemic Myalgic Encephalomyelitis in Clinical Neuroepidemiology
(ROSE FC, ed) PITMAN MEDICAL 1980: 374-389.

(6) DOWSETT EG, COLBY J. Long Term Sickness Absence due to ME/CFS in UK Schools:
An epidemiological study with medical and educational Implications. Journal of
Chronic Fatigue Syndrome. 1997; 3(2) 29-42.

(7) ARZOMAND ML. Chronic Fatigue Syndrome Among School Children and Their Special
Educational Needs. Journal of Chronic Fatigue Syndrome. 1998; 4(3): 59-69

(8) HYDE BM, CAMERON B, DUNCKER A. et al. Epidemiological Aspects of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome. Ottawa,
Ontario, Canada: The Nightingale Research Foundation. 1994 : 16-20

(9) DOWSETT EG RAMSAY AM, McCARTNEY RA, BELL EJ. Myalgic Encephalomyelitis
– a persistent enteroviral infection? Post graduate Medical Journal 1990; 66
: 526-530

(10) RICHARDSON J, COSTA DC. Relationship between SPECT Scans and Buspirone
tests in patients with ME/CFS Journal Of Chronic Fatigue Syndrome, 1998; 4(3)
– 23-37

(11) STREETEN DHP, BELL DS, Circulating Blood Volume in Chronic Fatigue Syndrome.
Journal of Chronic Fatigue Syndrome. 1998; 4(1) : 3-11

(12) DEMITRACK MA, et al. Evidence for impaired activation of the Hypothalamic
Pituitary Adrenal axis in patients with Chronic Fatigue Syndrome. Journal of Clinical
Endocrinology and Metabolism. 1991; 73 : 1224-1234.

(13) LEON-SOTOMAYER I, Epidemic diencephalomyelitis – a possible cause of neuropsychiatric,
cardiovascular and endocrine disorders. 1969. New York 1003 : Pagent Press International
Corporation

(14) BASTIEN S. Patterns of neuropsychological abnormalities, and cognitive
impairment in adults and children. In Hyde, BM. Goldstein J, Levine Peds. The
clinical and scientific basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Ottawa. Ontario, Canada. (See reference 3 above) 1992: 453-460.

(15) CHAUDHURI A, BEHAN WMH, BEHAN PO et al. Chronic Fatigue Syndrome. Proceedings
of the Royal College of Physicians, Edinburgh, 1998; 28 : 150-163

(16) LANE RJM, BARRETT MC, WOODROW D. et al Muscle fibre characteristics and
lactate responses to exercise in CFS. J Neurology and Psychiatry 1998; 64 :
362-367

(17) BELL DS. Chronic Fatigue Syndrome in Young People with ME. Lecture given
in London on 25.8.98.

(18) BRUNO RL, Interview in “ME – The New Plague”, COLBY J, Peterborough. First
& Best in Education Ltd. 1996; 39-54

ME/Chronic Fatigue Syndrome In A Nutshell

M.E. In A Nut Shell By Dr Dowsett

When I saw Dr Dowsett In September 1994 she gave me the following notes
to accompany her chat with me. I think they are fairly self-explainitory so
I typed or OCR’ed the document for someone a long while a go. I have not included
most of the Pictures because I sent it in e-mail. I would tidy the document
up but I am not sure Dr Dowsett would want it on the Internet so I will
leave it as is for now and see what happens. If you have any questions please
ask me.

History

ME is not a new disease, but has been recognisable throughout history
under different names and in a variety of different guises. E.g.

  • 1750 (UK) "The little fever" – Dr Richard Manningham
  • 1869 (UK) "Neurashenia" – Dr Beard, Dr Wier Mitchell
  • 1934 (USA) "Atypical Polio" (Staff of Los Angeles General
    Hospital)
  • 1948 (Iceland) "Akureyri Disease" (Staff and pupils of central
    High school)
  • Epidemics of ME in hospitals and schools have been a striking new feature
    in the 20th century.

    WHICH VIRUSES CAN CAUSE ME?

    The failure of the 1953 polio epidemic in Iceland to spread into Populations
    previously affected by ME in 1948, indicated:- (a) Competition between
    the polio virus and the agent of ME for the sane receptor Sites in the
    bowel (b) That the agent of ME could persist in the body for 5 years.

    Technical advances since 1950 such as Electron Microscopy and detection
    of minute quantities of virus genetic material in muscle indicate that
    ME arises as a complication following infection by one of the 68 viruses
    comprising the Enterovirus Group (Polio. Coxsackie A & B viruses, Echo
    viruses etc.). The routes of spread, social and geographical incidence
    of all viruses in the group are similar. Small children in whom symptoms
    are usually trivial or absent, are the main reservoir from which health
    care staff, schools and parents become infected. Polluted food, water,
    lack of sanitation and previous unfamiliarity with the viruses circulating
    account for travel and holiday associated with ME.

    WHY HAS M.E. BECOME SO COMMON IN THE 20TH CENTURY?

    The introduction of sanitation (running water and WC’s) into the homes
    of all classes in society, interrupted the natural spread of these viruses
    during early childhood which had been going on since time immemorial and
    which afforded life long natural immunity at the small expense of a very
    occasional childhood complication (e.g. "infantile paralysis"
    the former name for poliomyelitis). If this primary infection is deferred
    until puberty or later, the greater susceptibility of the adult nervous
    system to damage, produces epidemics marked by serious complications in
    older age groups.

    WHY DO SMALL CHILDREN HAVE AN IMMUNE ADVANTAGE?

    The immune system is most active in early childhood. apart from large
    tonsils, adenoids and other lymphatic tissues, the thymus gland (situated
    in the chest) provides a comprehensive education for white blood cells
    including B cells which make antibodies and the T cells which provide a
    security task force against cancerous or virus infected cells. As puberty
    approaches (and nature assumes you have already done your "homework"
    on infection), these tissues shrink and the thymus gland disappears. However,
    the adult immune system though slimmer, is still able to mount an effective
    defence against virus infected cells. White blood cells (like a task force),
    are directed to surround and destroy the enemy.

    HOW DO VIRUSES EVADE THE IMMUNE SYSTEM?

    Evolutionary changes which allow viruses and host to co-exist without
    damage, are of mutual benefit and have developed in most infections which
    (unlike AIDS), maintain stable associations with the human race. For example,
    chicken pox which zips itself into the genetic code of spinal nerve cells
    may reappear later in the limited form of "shingles" if the immune
    system is depressed for any reason. Other viruses including those most
    commonly associated with ME, make mistakes during multiplication and deposit
    a poorly constructed variant or "mutant" virus in the cell.

    Vigilant T cells detect the abnormality but fail to recognise a clear
    target. The resulting battle between a normal but hyperactive immune system
    and an abnormal defectively constructed virus, leads to production of natural
    antiviral chemicals and to many of the most troublesome symptoms of ME,
    e.g.. recurrent ‘flu like’ symptoms and sore throats with or without glandular
    enlargement. Should the immune system be deflected from this struggle by
    a secondary infection, immunisation, immunosuppressive drug or severe stress,
    the battle will be unnecessarily prolonged and complicated by relapses.
    Secondary infections which severely depress the immune system (such as
    glandular fever, influenza or chicken pox) and which are easily diagnosed
    in the laboratory, may be given credit for causing the illness rather than
    producing a relapse. It is most important that the patient is given every
    form of mental, physical, medical and social support early in the illness
    to assist the normal progression of this immune struggle towards stability.

    What Problems May be caused by Persistent Viral infection in a Cell?

    ( 1 ) MUSCLE

    The activity of any mammalian cell is analogous to the function of a
    petrol engine, i.e. fuel (Food and oxygen) is transformed into a serviceab1e
    form of energy such as gas (ATP) by means of elector/chemical conversion
    from a battery (mitochondrion). In cells colonised by a defective but persistent
    virus, energy production is delayed. When this delay occurs in a muscle
    fibre, an alternative energy cycle (without oxygen) is employed ( in marathon
    running) to tide over the deficiency. This leads to overuse of Type II
    muscle Fibers and accumulation of lactic acid. Thus, a patient with ME
    who attempts minimal exercise early in the illness (before energy problems
    have begun to stabilise) or who over exercises later on, suffers unpleasant
    pain, cramps and involuntary twitching more appropriate to a marathon runner.

                                   OXYGEN!
                                                       O
                                      0                /-
                                     -!-              /-   ___
                                      !              /  ! !
                                     /\                ___!
                        0           /  \             !       Aerobic
                        !-    _______________________!       Cycle
                        !_   !                               -> No
                       / !   !   "Second Wind"               Harmful
                      /  ____!                              Waste
                        !                                    Products
                        !
                   _____!
    
    
                   Anaerobic Cycle
                   -> Latic Acid in                                
     

    A Marathon Runner tops up with Anaerobic cycle – Latic Acid, Pain Cramp

    (2) BRAIN

    Recent research, using sophisticated brain scans as well as measurement
    of electrical, chemical and hormonal activity, demonstrates similar energy
    deficits in the brain and spinal nerve tracts of patients with ME.

    SYMPTOMS AREA OF BRAIN OR SPINAL CORD AFFECTED

    (a) Problems with spatial Left temporal lobe and orientation, word finding,
    adjacent nerve pathways. numerical calculations, taste and smell, orientation
    in time, ‘panic attacks’, fits.

    (b) Failure of brain to activate Reticular activating system itself
    resulting in fleeting in spinal nerve tracts. attention span and inability
    to stay awake.

    (c) Prolonged weakness (lasting General impairment of for days after
    a stressful glucose metabolosm in nerve event) cells owing to abnormal
    steroid response to stress (see E below)

    (d) Involuntary movements, In various locations:- Disturbances of mood,
    depletion of neuro- gastrointestinal motility, transmitters or their circulation
    and other breakdown products. ‘automatic’ activities. DOPAMINE SERATONIN
    (5HT) & NORADRENALINE

    (e) Failure to regulate and Hypothalamus and synchronise "biological
    pituitary gland. clocks" which control circadian (daily) rhythms,
    steroid response to stress, sleep, mood appetite, weight and growth, temperature
    and water regulation thyroid, sex and other hormones.

    (f) Disturbances of sensation, Spinal cord, cerebellum, balance and
    of sight and thalamus and sensory cortex hearing (not due to muscle weakness
    alone).

    (g) Abnormal sensitivity to pain Decreased production of natural opioids.


    I recently noticed the following is not from ME In A Nutshell. I think it is
    the preferred leaflet of the originator of the Suffolk ME Association support
    group (Now sadly folded).

    Illness Management

    1 Accept that you are ill.

    Due to the negative publicity associated with M.E., When it is diagnosed
    people often deny that they are ill, saying "I’m not that type of
    person". First of all it is important to realise that the illness
    affects all sorts of people, and that in trying to fight the illness you
    are lessening your chances of recovery. Accepting that you are ill with
    M.E. is the first step to recovery.

    2 Accept that your lifestyle will change.

    None of us wants to change our lifestyle; to give up things which are
    important to us, work, social life, enjoying the children or giving up
    sport. The reality of M.E. is that some changes will have to be made to
    lifestyle and the amount of energy used on a daily basis by the individual
    with the illness. Without a planned change in lifestyle, recovery will
    be delayed.

    3 Begin to think about how much energy you use each day.

    When we talk about the use of energy, we are talking about the effort
    involved in getting out of bed; making breakfast; getting dressed; walking
    to the shops etc. Some activities take more energy than others, for example
    vacuum cleaning or washing and hanging clothes, ironing, cutting the grass
    or making a meal. It is clear that there are some things which are more
    difficult than others to stop doing or cut down on. You must try and cut
    out as many unimportant things as possible.

    4 Try and balance activity levels with rest.

    It is very important to view your activity level as a balancing act;
    too much is bad for you, too little is also bad for you. Each individual
    has to find the level of activity and rest which is right for them, this
    balance will change during the course of the illness. Trial and error is
    involved in the process, with some set back inevitable.

    5 Begin to listen to and understand messages from your body.

    We are all educated to push ourselves to achieve goals throughout our
    lives. This is not a useful philosophy when dealing with M.E. You can not
    fight the illness and win. Struggling on is likely to result in the illness
    becoming chronic. Begin to listen to the signals your body gives you. Help
    it to recover by understanding its (temporary) limitations.

    6 Don’t feel guilty about relaxing.

    Relaxing is a difficult thing to do properly. Whenever you feel the need to
    relax there are key things to keep in your mind. Lie down. Close your eyes.
    Help your muscles to ease. By doing so you are helping your body to recover.
    Don’t feel guilty about doing nothing. All the things you have to do can wait.
    If you were confined to bed they would have to wait in any case.

    7 Keep your sanity

    In any illness you can expect to experience anger, doubt, frustration
    and feelings of despair and depression. These feelings form part of an
    expected reaction to an illness which has seriously interrupted your life.
    By acknowledging the existence of these emotions, it is important to know
    that these feelings are shared by many people with this and any other long
    term illness, and by many carers of people who are ill. Don’t be afraid
    to discuss these problems with your doctor.

    8 Motivation is crucial

    It is difficult to deal with all the pressures of being unwell for more
    than a couple of months. With M.E. you are likely to have many disappointments
    during the course of your recovery. It is very important that you realise
    this fact and so, by understanding the nature of the recovery process,
    you can anticipate the disappointments, and equally, months of well being.
    When you are feeling good, it is important that you fight the urge to make
    up for lost time. To do so is likely to lead to problems. Try to maintain
    a gradual recovery process by moderating your activity expenditure. Later
    on you could try gradually pushing back the boundaries and slowly increase
    the level and extent of your activities.

    9 Monitoring progress

    Progress at best can be a slow process. It can be helpful to keep a
    diary of how well you feel in any given day. By doing this you can keep
    a record over a longer period of time which will accurately reflect the
    progress that you make.



    The Polio Paradox – Richard L. Bruno H.D., Ph. D.

    I read this book because it was recommend by the specialist that originally
    diagnosed my M.E., Dr Elizabeth Dowsett.

    She actually gives the book a recommendation on the back cover. I was diagnosed
    in 1994 and have fairly religiously stuck to her advice but there was only so
    much information that could be passed to me in a consultation.

    Reading this book really felt like a detailed explanation of everything I was
    told. It gave me a much greater understanding of my illness and a valuable source
    for of reference for discussions with illness disbelievers.

    It actually took me a lot of will power to read this book as I hate anything
    vaguely medical or Biological. This book starts off in an investigative sort
    of way and there was only about one chapter where I struggled to keep interested.
    This predictably was the detailed explanation of how Polio invaded the body
    and caused it’s trouble.

    I of course had an extra problem to contend with here. I am an ME sufferer
    and I was vaccinated against Polio so I can’t have Polio or Post Polio Syndrome
    (PPS). As I read the book though I couldn’t help noticing how 90% of the symptoms
    fitted my case. (This is most unusual for ME. I find my symptoms tend to only
    match 50% of other sufferers). I was therefore wondering all the way through
    what the link between Polio and ME would be. It was great getting explanations
    for my being colder than most people, my legs and brain more tired. To have
    a believable explanation model in print is invaluable for explaining to doctors,
    consultants and general disbelievers. I am also convinced it explains what has
    happened with the three other ME sufferers I know. I have discussed it with
    one but I still need to contact my other friends.

    I think if an ME sufferer is to read this book, and they or someone close to
    them should, then I would recommend they read Chapter 17: Fatigue By Any Other
    Name first. This will at least then give the reader scope to chat about what
    they’re reading in a more knowledgeable way as they are reading it. I found
    this book so interesting I wanted to discuss it with my partner almost chapter
    by chapter but I could not explain what the ultimate relationship to me was
    going to be so I didn’t know if I was becoming a hypochondriac who was not aware
    they were getting phantom symptoms.

    This book is also of interest to Chronic Fatigue Syndrome, Gulf War Syndrome,
    and Fibromyalgia sufferers among others. Again I recommend getting the context
    first by reading Chapter 17 out of order.