There are many terms for what is probably the same illness. Most are inappropriate, but that it is because the people who invented them are stupid. Doctors have a long history of pretending they know what they are doing. They give latin and greek names to illnesses to appear smarter than they are. The terms provide a convenient label for inconvenient patients. Using acronyms allows doctors (and other people) to stop thinking about what things actually mean.
M.E. stands for Myalgic Encephalomyelitis. The first part refers to muscle pain. The second part means brain nerve-coating disease. You can see that it doesn't actually explain anything. The second part is applied to several "different" medical conditions (including multiple sclerosis).
P.V.S. stands for Post Viral Syndrome. The first part means that the cause is no longer present (which I can prove is not true). The second part means the cause was a virus - which doctors don't even bother to prove. The final part is the most insulting as it generally means the doctor believes that the patient is making it all up. Occasionally this term is expanded to P.V.F.S. where the F stands for Fatigue.
C.F.S. stands for Chronic Fatigue Syndrome. The first part means the illness is prolonged (this is 40 years and counting for some victims). The second part means tiredness (mental or physical) and does not imply a cause. The last part is the typical insult to the patient by implying a lack of cause.
It is worth contrasting the term chronic as used above with the term acute. The latter is applied to illnesses doctors regard as serious (often life-threatening). They do not take CFS seriously at all. There is another illness, CIDP, that seems remarkably similar and yet is taken much more seriously by doctors.
If you've ever heard the phrase "a fate worse than death" you probably haven't thought about it very hard. Death isn't actually a big problem and doctors are far too preoccupied with preventing it. Quality of life is much more important and deserves more attention than it gets. Almost any fool can create a life and a great many do every day. Being dead does mean that you are no longer alive, but hey, you don't care because you're dead!!! Being alive, disabled, in constant pain and with little hope of recovery is a fate worse than death. That is what having a chronic illness really means.
Even prisoners who are victims of torture often have some hope that they may be released. They may know that there are people on the outside fighting for their rights. They can reasonably expect sympathy at least. Contrast that with the victims of chronic illnesses - who are ignored or mentally abused by doctors, colleagues, friends & relatives.
The issue of symptoms is slightly complicated by the inadequacies of doctors. The bucket terms above potentially allow for patients with quite different illnesses to be grouped together. Also people may have more than one illness at a time. Worse yet, the way patients are treated (or mistreated !) can add to their symptoms. However, there does seem to be a core set of symptoms which can reasonably be ascribed to one illness.
I believe this to be an inappropriate immune response to a persistent infection. Genetic pre-disposition to allergy may be a factor. Environmental damage to the immune system is definitely a factor. Any psychological changes appear to be effects rather than causes.
So far all the doctors I have approached have refused to investigate properly. I have several ideas for diagnostic tests and provisional treatments. As usual I am being ignored by the establishment. In the past it has typically taken doctors 20-25 years to catch up with what I've been telling them. That means a lot of people suffering unnecessarily during this period.
If my theory for CFS/ME can eventually be proved, the new terminology for the illness should be CARPI. This stands for Chronic Allergic Reaction to Persistent Infection. It would mean more than the current terms and show the relationship to anaphylactic shock (which should be called Acute Allergic Reaction).
There are many reasons why identifying the causative infection is hard. None of them are sufficient excuse for the failure of doctors even to try. If doctors had a decent education they would be aware of the limitations of their tests. If doctors had decent IQs they would catch themselves making false assumptions. If doctors had a decent system of monitoring (quality control) they wouldn't be able to get away with their bad attitudes & sloppy standards so easily ... but I digress.
Firstly, the infection can be almost anything. Looking for one bug in all cases is futile. Many symptoms of any illness are due to the body itself not the bug. The infection may be viral, bacterial, fungal, or even inorganic.
Secondly the symptoms can be very wide-spread and diverse. The immune system has to be able to affect the whole body in order to do its normal job. Only differences from "classic" CFS would indicate the nature of the non-immune component. To make the distinction requires someone a good deal more scientific than a doctor.
Thirdly, an infection can be very good at hiding from detection or destruction. The virus which causes Chicken-pox can hide in the nerves to emerge later as Shingles. While in hiding doctors cannot detect it. Bacteria and viruses are known to hide in bones and teeth. Doctors cannot detect them in situ but they can emerge to infect the rest of the body when weakened. Any damaged or scar tissue can be a focus for infection. For example the lungs of asthmatics and repeated infection sites such as tonsils, ears & lungs.
Even if an infection is bacterial, a given antibiotic may not work. The bug may be resistant or the drug may not reach a high enough concentration in the affected area. Antibiotics are less able to reach scar tissue because of the lack of a blood supply. Doses given may be too low or of too short a duration. The nature of an antibiotic may mean it would never target the infected area anyway.
I can prove that my CFS was a persistent bacterial infection. I caught it and transmitted it in what can only have been an airborne manner. I cured it after two and a half years with an antibiotic (proving both the nature and the persistence of the cause). All the doctors I had seen had failed to check properly for an infection. The existing tests aren't exactly reliable or comprehensive anyway.
The only reason I was ill for so long is that doctors are relatively stupid. I was able to deduce from my atypical symptoms the most likely location for my infection. Any antibiotic had therefore to be able to reach these tissues to stand any chance of working. Having had antibiotics for secondary infections I could tell that my infection had some resistance. This narrowed down the likely bacterial groups. With these targets in mind, I was able to deduce which antibiotic was my best bet - and got it right first time. This is precisely the job one expects a doctor to do but which unfortunately requires the abilities they most lack.
The description Post-Viral Syndrome used by one of the doctors cannot be accurate in my case. A virus is unlikely to respond to an antibiotic. If the infection was not persistent (ie was POST-...) it could not have responded at all! The placebo effect can be ruled out for two reasons. I have a life-time of evidence that I am not influenced at all by what any drug is meant to do. Other antibiotics taken for secondary infections had not cured the CFS. Only the right antibiotic (one to which the bug was not resistant) worked.
The most appalling thing about my case is the way all the doctors behaved. It is absolutely essential that a doctor be capable of listening to the patient and keeping accurate records. The doctors involved in my case consistently failed to record my symptoms accurately. As well as ignoring the facts I was presenting they also made up falsehoods which they did record. Without accurate data it is impossible for even an intelligent person let alone a moronic doctor to arrive at the correct diagnosis. Several of the doctors (without specialist psychology qualifications) effectively psycho-analysed themselves rather than me. They are highly dangerous amateurs - stupid enough to believe they know what they are doing and powerful enough to get their word taken as law. They couldn't prove any of their imaginings but wrote them into my notes regardless while ignoring the genuine facts. This will be happening in a hospital or doctor's surgery near you right now. Someone else once characterised this type of attitude with: "don't confuse me with the facts, my mind is made up".
Unfortunately anyone with a viral infection may be stuck with it. There are very few treatments for viruses. They tend to be more expensive and only target specific viruses.
There are various forms of interferon. Your chance of being prescribed one is only slightly higher than the chance of it working - i.e. virtually nil on both counts.
Fungal & microbial infections are reasonably likely to respond to antibiotics. Candida can even be partly treated by dietary changes.
Examples of persistent inorganic infections are silicone implants and mercury amalgam fillings. Once silicone has leaked it may be impossible to remove it from the body. I would suggest not putting any into the body in the first place.
The medical profession are currently trying to pretend that silicone can't cause any immune problems. They base this not on evidence but on a lack of evidence and flawed assumptions on the applicability of statistics. It is the usual problem of failing to look or looking in the wrong place. It is hard to tell whether it is because they are just thick or actively evil & unwilling to admit liability.
Any psychological effects are probably the result of post-CFS causes. The first is natural depression at long-term illness and disablement. The second is mental abuse from family, friends, colleagues, and (most damningly) doctors. If someone is told they are worthless and that everything is their fault they may believe it.
The first can be shown by comparing CFS cases with other disabled people. The second has precedence in non-CFS cases. Unfortunately the medical profession have a vested interest in not investigating their own role in damaging patients. Significantly, I was rejected by an ME clinic for not being depressed. That was the only thing they got right. Where they were wrong was in assuming CFS/ME had anything to do with psychological illness. I didn't get the additional problems suffered by some victims despite receiving my share of mental abuse. The difference between me and other people is that I have always known how incompetent doctors are. I was never likely to believe an ignorant doctor's opinion over my own well-informed one.
It is known that cases where people start resting immediately have a better prognosis. This can be explained quite easily as having several components. The body needs to save its energy for fighting an infection. Being permitted to give up work/school shows acceptance by other people. So these patients are probably not suffering the mental abuse that others do. These patients are also no longer exposed to the environment that may have damaged their immune system. There is no shortage of dangerous chemicals in work-places and schools.
The government disapproves of children missing school but it can be done. It is possible to get a much better education at home anyway! Giving up work, even when barely capable of continuing, brings financial hardship. The government attitude to disablement benefits makes things worse. Dealing with an incompetent doctor is harder. It may be necessary to sue the doctors of long-term CFS patients for personal injury. Not only do they fail to cure CFS, but they cause psychological damage to their patients. Finally, it is the misdiagnoses of doctors that prevent people getting the benefit money they need.
A good way to start a precedent for law-suits would be ulcer cases. Ulcers have been known to be due to a bacterial infection (helicobacter pylori) for a long time. Doctors have continued to blame patients for leading stressful lives. They have confused cause and effect by not investigating properly. An ulcer causes stress rather than being caused by stress. Blaming the patient and unnecessarily messing with their life-style will cause more stress. Anyone mis-treated with acid suppressants instead of antibiotics in the last ten years or so has a good case for prosecuting their doctors.
As an aside, stress is not the word doctors should be using - strain is the correct engineering term. It is not the conditions (stress) that matters, it is the effect (strain) on the individual that would be the relevant measurement. What one person may regard as a stress is of no consequence to another. Doctors incorrectly assume that people are the same (even if theoretically they should know it isn't true).
CFS cases can also be divided into sudden and gradual onset. My guess is that sudden onset is due to an infection contracted after immune damage. Gradual onset would be from a pre-existing "benign" infection to which the body only reacts after immune damage. Silicone poisoning would qualify as both the immune damage and the infection.
It may be possible to develop simple tests to categorise CFS cases. I have been unable to get any support from doctors to do this. Since I suspect an allergy/immune component I would begin there. There are standard pin-prick tests for common allergens. It should be possible to develop some for various infections. These must include the proteins used in the coats of bacteria and viruses. Any typifying by-products of the metabolism of these organisms would also be good choices. All the components of silicone implants and tooth fillings should be made into tests.
Note that the reason pin-prick tests are used to detect allergies is seldom acknowledged. The body is a lot better at detecting things than artificial methods are! New sensitive tests for anything tend to rely on combining an organic process with an electronic one. Pin-prick tests would not be necessary if doctors could tell from just looking at blood or genes. Doctors tend to pretend they know what they are doing, but they don't. Doctors may even be aware of this in theory, but still fail to remember it in practice.
If my allergy theory is correct then treatments used for anaphylactic shock could also apply to CFS. It would help to prove the cause but would not be a cure. These treatments don't cure cases of anaphylactic shock either. All they do is keep the body going while it disposes of the allergen itself. The sort of infections that cause CFS are not so easily removed. Examples of treatments are adrenalin, oxygen at higher levels than normal and antihistamines. In fact I already know that antihistamines and adrenalin make a difference.
The information I provided for InterAction was only printed in part and in the wrong section. I actually sent them my article in Spring 97 but it was "mislaid". It was finally published in a very late issue at the end of 1997. As well as providing facts I also asked for people to try Ciproxin and report back.
Despite the poor coverage in the magazine I did receive some letters. However, even for a bunch of chronically ill people its readers seem astonishingly apathetic towards getting cured. Here is a summary of the feed-back received so far.
One person sent me copies of moderately recent American research. It was proof that some infections can hide in teeth and other bones. It showed these infections can go undetected by normal techniques, resist normal levels of treatment and cause CFS symptoms. The researcher killed some rabbits by transplanting suspect but sterilized teeth from patients, whereas rabbits given healthy teeth survived. He ought to experiment instead on the doctors who still refuse to believe in persistent infections. The person who sent this had previously improved after taking 5 days of Ciproxin but hadn't been able to obtain more at the time of writing.
Someone else had managed to persuade their GP to give them Ciproxin. This person reports feeling very much better but nervous that the effects won't last. The prescription was for only 10 days and this might indeed not be enough antibiotic for a full cure.
I had one rather depressing letter from someone whose daughter gets better every time she has the antibiotic Cephalexin. The bit of her story which is depressing is that her quack consultant claims it must be some mysterious neuro-transmitter effect. He wants to experiment along these lines rather than continue with the treatment that works. Presumably this is because he refuses to believe the illness could be a persistent infection. Unfortunately for the girl's future, her mother appears to have been taken in by him.
Another letter was from a mother whose son was "his old self" on 10 days of Ciproxin but relapsed when no more was prescribed for him. She claims to have tried everything except Chinese medicine and have had no success with anything except the Ciproxin. She is wary of insisting on more Ciproxin in case there are long-term side-effects. I have had no such side-effects and doubt that any would be worse than the known side-effects of allowing CFS to continue untreated. Not one person has written complaining of a bad reaction to or side-effects with Ciproxin. Incidentally, Chinese medicine might actually work if they have any antibiotics or anti-viral drugs. After all the most effective Western medicines are merely old-fashioned herbal remedies disguised as pills.
Three people wrote to say they were intending to try Ciproxin but hadn't done so yet. While it is nice they are enthusiastic enough to want to write, it is results that count. There are thousands or hundreds of thousands in the "haven't tried Ciproxin yet" category. I am trying to get an idea of the percentage of CFS cases that would respond to antibiotics - specifically Ciproxin. I am simplifying things by not including antibiotics other than Ciproxin for now. A high enough success rate might persuade doctors to start bothering to treat patients instead of ignoring them. It is also important to know what percentage of people might be harmed by treatment.
The latest feedback includes one that almost belongs in a separate category. The person is a long-term CFS sufferer who is now getting better slowly on a combination of antibiotics. One of these is Ciproxin, but only at a low dose of 250mg twice per day. This person wondered if improvement could be speeded up with more antibiotic. I believe the answer to be yes. The difficulty is in finding out which of the 2 antibiotics is contributing most. That would involve removing one antibiotic and/or increasing dosage and this test has not yet been done. Meanwhile I have decided to add this in as a success unless further evidence proves otherwise.
So far the results are: 7 helped, 2 no effect and 0 harmed.
While this looks like a 78% success rate it is NOT a large enough sample yet. If you have tried Ciproxin please write to S.Foord, The Archives, 33 Neale Close, Cambridge CB1 3LE. Alternatively, email s.foord@pedag.org with subject set to CFS. I really do want to hear about failures as well as successes. It is the only way to get anywhere near doing an unbiased study and convince someone to run a properly controlled one. I take science a lot more seriously than the quack doctors who publish half-baked psychiatric research.
Bayer, the manufacturer of Ciproxin, had agreed to provide the drug free for any proper study. However, I have been unable to find a single doctor willing to take them up on this generous offer. Clearly the myth that all drug manufacturers are greedy and uncaring is as unjustified as the myth that doctors are altruistic and caring.
If you have reason to believe you have a persistent BACTERIAL infection it would be worth trying Ciproxin. Ask your doctor for a prescription first. Even if they say no, this means they can't pretend they haven't heard of the cure if you want to sue them later. You can't buy Ciproxin over the counter in this country but you can abroad (eg Spain & Portugal are likely). Buying abroad means you won't get the advisory leaflet in English. It may be possible to get a copy from a pharmacist here but I'll tell you the important bits now.
You should NOT try Ciproxin if ...
What the leaflet basically says is that there is a low risk of some side-effects. This is hardly surprising since that applies to all(?) drugs. Most problems can be avoided if you follow these simple instructions.
What you can expect to happen in the first couple of days is not very much. You might feel like you have a cold - I did every time I had to restart treatment. This is actually a good sign - the symptoms mean the drug is breaking up the bacteria just as your body should have done. You may even start to see a slight lessening of CFS symptoms by 2 days. If it is going to work at all the effects should be pretty dramatic within 5 to 10 days. I was mostly back to normal - charging over the Downs faster than my mother could and without the CFS after-effects.
If you are getting better you should make sure you continue with Ciproxin until you can't spot a gap between doses any more. As long as you still feel any CFS symptoms before the next dose cuts in your infection still persists. If you stop taking Ciproxin, the bacteria will just start to breed faster and you will get sick again. It took me 9 months to wipe out my infection. This was probably made longer than necessary by my GP not prescribing enough Ciproxin, but I have been CFS-free for over 3 years now without it. Pay no attention to whether your doctors think you are better or not. Their opinions are not worth having when they didn't know you well enough to tell how ill you were. Rely on your own judgement and that of anyone else who could previously tell you were ill.
If you do get better, don't forget to go back and rub your GP's nose in it. Doctors will only learn how to do their job properly by being constantly reminded of their mistakes and other people's successes. They can't be smart enough to learn from logical deduction or they would have done so already. Some are too thick to learn even by experience and probably need ritual humiliation such as a law-suit to make the point stick.