....Diagnose Support

The Center of Disease Control (CDC Atlanta USA) has set standards for the diagnosis of Chronic Fatigue Syndrome and in the US it is regarded as a neurological condition if not more. Still one of the criteria is that a patient has to be 'fatigued' for over 6 months. While in fact when examined at the onset of problems a lot more can be done about it.

Feeling fatigued is always a sign of your body's protest and often of illness. If indeed you are suffering from stress or depression because of life changing events, now is the time to take a step back. It is also the time to at least get tested for commonly fatiguing infections like EBV (Mono, kissing disease) or Lyme disease and to have a preventive full blood test,  to watch your diet for a while and to increase exercise. If the fatigue is out of proportion, persists after life style changes or if any abnormalities are found in the first tests, please demand further testing as soon as possible and do not subside to your doctors opinion that it might just be a burnout.  

Where to start ? The basic testing. Sometimes patients are even denied a test for anemia. This should not happen in 2007. There are standard tests and there are tests, which are simple and inexpensive, but fall outside the standard tests, which you could take to see if you could be lining yourself up for a disorder that is often underestimated. On our research and treatment pages we will compile such a list.

Fatigue is a symptom of many diseases, amongst which C.F.S./M.E., Cancer, AIDS, Lupus, Sarcoidosis, .... The list is endless. Secondline testing to rule out a disease that has fatigue and aching as a symptom has to be performed. There is no one-stop test to confirm or exclude C.F.S./M.E. Often symptoms of C.F.S./M.E. can be awarded to other disorders after careful examination and testing.

Although often the most apparent symptoms, fatigue and flu-like achyness are only two symptoms of C.F.S./M.E. and they only mask underlying issues. Please read the research items and the items below for a better picture of C.F.S./M.E..

We have tried to summarize the most important aspects in Chronic Fatigue Syndrome which we feel should be communicated to patients and their family/friends. The information is gathered from observations of patients and reflected on research. There is more then meets the eye with C.F.S./M.E.. Most of what is written here is also applicable for FM. The topics below will all be featured in seperate items:

5) Altered perception and stress-response.

Feel free to contact us for more information, feedback or contributions to either of these topics. The writing is still in progress and your contribution is highly appreciated.

From patients testimonies it is clear that there are great differences in the way C.F.S./M.E.has began for them. Many complain about a never ending ‘flu’ that suddenly came upon them. Others started to show symptoms after a surgery, an accident, emotional trauma, a vacation, inoculations or a blood transfusion. Also moving house or working in polluted environments have been recorded to trigger C.F.S./M.E. symptoms. Finally there is a group of patients who perceive a graduate onset and cannot name or remember a specific trigger. 

All of the above also applies for the onset of Fibromyalgia. It may seem that anything can set off C.F.S./M.E. and FM, there is only a portion of those victims that develop full blown C.F.S./M.E./FM. Some have sibblings or parents with similar symptoms, some have fellow sufferers in their environment and others are 'stand alone', single cases.

"Crossing a road can kill you, but what are the odds and, you might not die, but just get hurt." There are many patients who recover or improve. Surely there are reports of miraculous recovery’s, but most patients improve because they educate themselves and work closely with their treating physician.  

Let us use the ‘Crossing a road can kill you, but it might not’ metaphor to describe a few possible scenarios in C.F.S./M.E.;  

• Some patients get off the hook with a few cuts and bruises.
• Most people suffer greatly and require extensive care, aid and rehabilitation
• Some recover fairly well, but will continue to have periods of severe relapses
• Some are in a comatose state and we do not know when they will wake up.
• Some people get hit from the right, others from the left, front or back.  

Maybe a patient could have taken better care of himself so he would have been stronger when the accident happened. Or he could have paid more attention in ‘traffic class’ or while he was crossing the road. Even with all those precautions, you could still get hit by a truck. Depending on where the truck hit you, the causal area spreads out pain and other symptoms to the rest of your body.  

Most patients do not know they have it coming and the ones that have come down with C.F.S./M.E. are so severely affected that it is not uncommon that they no longer can think clearly or can speak up for themselves. C.F.S./M.E. is a multi system disorder. That means that all or most main body systems are affected. This is resulting in a wide spread number of symptoms that could match any serious (and lethal) condition.

Not many patients get a chance to have all the required (CDC) testing done and often patients are awared the label of 'psychosomatic patient' when the obvious is ruled out. From the patients community we learned that many patients that have come down with C.F.S./M.E. were originally suffering from endocrine, neurological or immunological disorders which only can be ruled out by second line testing.

When C.F.S./M.E. is diagnosed with due-diligence, it is imperative a patient receives symptom treatment to prevent further damage, restore sleep, keep opportunistic infections at bay and that the patient receives support in learning how to cope with these new circumstances. Once the condition is stabilized a patient can choose from various (experimental) treatments and clinical trials in an attempt to further improve.

Researchers claim that patients who are severely affected with C.F.S./M.E. suffer as much or more than patients with AIDS or Cancer. People with a milder case of C.F.S./M.E. already run the risk of developing cancer, heart failure or to commit suicide at a far younger age then normal individuals. 

The statistics are horrific, yet the condition C.F.S./M.E. is still not acknowledged in many countries or only as a psychological disorder. Deep down, the patient feels that something is 'broken' and that their body has abandoned them. No matter how much they love their job or family, it becomes impossible to maintain the required level of activity. They see their life as they knew it dissapear bit by bit.

From this point onwards there are two groups of patients. The ones that do not get help and the ones that do.

When you have a multi-system disorder, also your hormone levels and neurotransmitters are affected. This can lead to a reduced stress-threshold, anxiety and depression. Patients will be at risk to overreact to incidents, causing a panic reaction (Fight or flight response) with the result of further depletion of body reserves. Stress also triggers acute hyperglycemia, further feeding the anxiety. Especially cases which involve neurotoxicity (excitotoxicity) have extreme problems maintaining a balance.   

• A reduced stress-threshold means that a patient responds more intensely to incidents then normal individuals.
• An anxious feeling will arise during a chronic or acute stress response.
• Depression usually starts when the addressed reserves during a crisis are depleted.
• As this cycle repeats itself, the various stages follow each other more rapidly and the depleted body goes into survival mode whereby all non-critical (organ) functions are deprived of energy. A next crisis can be 1/10 the size and still provoke the same reaction because you are running on emergency fuel. 

With “Stress” we mean any physical or psychological stress factor. Our body also goes into ‘stress mode’ from infections, allergies, (late) onset of genetic disorders, organ failure or trauma from an accident. Many patients testify to the fact that when their physiological problems where dealt with or when they achieved remission, also the defective stress response is brought back to normal. Researchers in C.F.S./M.E. acknowledge this and continue to search for the underlying factors that cause patients to suffer from this particular symptom (which is just one of many). 

It is needless to say that the everyday stress of not being taken seriously or not being understood, poor bedside manner of doctors and receiving the wrong medication patients live in, is contributing to this endless circle. One reason raising awareness for these illnesses is imperative.

Altered perception symptoms are highly problematic for various reasons;  

• A patients perception on everything in life is intensified. They really see a dog, not a mouse. No matter what you tell them, they keep on seeing a dog that will become a horse and ultimately an elephant. This says nothing about a patients' personality, it is merely a sign of a physiological malfunction. The increased susceptibility to impulses leaves them target to the stress response and depletion cycle 24 hours a day. 
• Another often seen phenomenon is the ‘derailed award’ response as seen in people with a deficit in serotonin. This means that patients continue to spend energy on things (activity/people) because they are convinced it will be rewarded or because they feel that the reward they are getting is much more valuable then it is in reality. This leaves patients as easy targets for people that want to take advantage of them. When someone tries to discourage a patient from taking certain actions, the patient will most likely act very defensively and rates the ‘award’ of his intended actions even higher then before. Or they turn 180o and become desillusioned because they realize they will never reach their goal, which is followed by depression. 
• The altered perception and award response are also the very reasons why people do not realize they are ill in the early stages. Often we hear people who lead very full and energetic lives before they fell ill. It could be that the adrenaline burst from the first small signs of the lower stress threshold is exactly what makes that happen. As long as they are exposed to (even a healthy kind of) pressure, they will continue to function and probably even excell in their field. Untill a larger kind of stressor (physical or psychological) tips them over, or when all reserves are used up.      
• Because of their altered perceptions and expectations, other people might not take them seriously anymore. This is the main reason why doctors without C.F.S./M.E. knowledge prescribe patients with anti-depressants or anti-anxiety drugs. When those medications are used as supportive treatment in the appropriate dose there is no reason for concern. However, without taking away the real cause of the issue, the stress response might be reduced or less noticeable, but it will continue below the surface, further depleting your system which now also has to deal with the chemicals in the drugs. In addition, without education about the backgrounds of C.F.S./M.E. a patient can adopt a psychological diagnosis where it is inappropriate and other aspects of the illness or complications remain untreated.   

How to stop the stress response and depleting energy cycle? 

• Rescue. Many patients have benefited from low-dose anti depressants which help them take the edge off and often they also help with sleep. If you have sleep medication and the attack is severe, using a low dose of that (1/4 of your normal sleep dose) will also help you calm down. For other patients a dose of ibuprofen is all it takes to calm down muscle and nerve responses. The continuous stress response is dangerous and if you feel a certain medication is helpful, do not hesitate to use it to rescue yourself from spiralling out of control. We do urge you to keep looking for physiological and psychological stressors so that ultimately there is no more need to eliminate this symptom. 
• Replenish. While in the cycle there are various stages in which eating becomes a problem, leading to further depletion of reserves, further lowering the ‘stress threshold’. Nutrition is an important element in all chronic illnesses. Your body is already struggling with energy production; taking away the source is not helping. Unless you are vomiting or heaving diarrea, eating will help you recover from a stress response or panic attack. After eating (preferably a high carbohydrate meal with a lot of vegetables) it is wise to lie down for about 15 minutes to prevent that all blood will flow to your intestines for processing. Lying down will also slow down your heart rate and relax nerves that guide food through your intestines. If you know that eating is a problem during such an episode, always keep an energy drink at hand. Liquids are to be replenished as well, dehydration can lead to further problems the next day. If the cycle keeps repeating itself, dehydration itself can be the only culprit in continuing the depletion. Without liquids and a proper electrolyte balance, food, medication and supplements will not work.
• Rest. There is no point in trying to achieve anything after such an episode and pushing yourself to do so is going backwards. Lying down will help you as described above by lowering your heart rate. Any position whereby the heart is at the same height level as your head will be helpful as it does not have to pump as hard to keep blood pressure up. It takes a lot of energy for the heart to do that, so if you adjust your position, reserves will be filled up again faster. A hot shower or bath followed by a cold after splash will help you kick your body back into normal routine as well.  
• Recover. Most patients complain that after a stress attack the day itself, or the following day, they feel completely drained. As we explained in the cycle, that is exactly what happened. When your body has to dip into emergency fuel, there is not much left. If you have researched your supplements, you might know which one will help you get back on track. We have seen reports that for instance omega 3/6, glutathione, co-enzyme Q10 and vitamin B can help restore deficits quickly. Again, liquids and electrolytes are very important. Even though a patient might be exhausted, a brief walk or breathing exercise can help restore circulation and oxygen levels and the removal of toxins produced by the attack.

If your doctor does not see the emergency you see, there are a few things you can do that will tell you a lot about your condition. Often patients with CFS/ME and FM struggle with getting their point across to their doctors. This is partially due to the doctors' perspective on ill-defined disorders, partially due to the impairment in cognitive processes, the broad scope of the symptoms and energy allocation during stress.  

Patients can allocate their energy so that it seems when they are at the doctor's surgery, not too much is wrong with them. One reason being that during a stressful event (as a doctor's visit can be) adrenaline is generated which makes your body temporarily more able to fight against your ailments. In addition, a regular physical check-up is a ‘one moment’ event. It can very well be that your breathing, pulse, blood pressure, etc at that specific moment are perfectly in order, whereas at night you have heart palpitations and in the mornings you find you can’t breathe. At no such event is your doctor present and if you live alone, there are no witnesses. 

Doctors per definition, act on tests and results. For some patients they eliminate the need to test further, when the initial (superficial) physical exam is passed if there seems to be nothing wrong with the patient. How to go about this situation? Do your own testing! It’s a small investment, but can be what saves your health. Not only are these items helpful in the diagnostics phase, but also to recognise a crisis or complication and to monitor side effects of medication, supplements or to aid in an allergy elimination diet: 

• A proper thermomether 
• A glucose monitor
• Urine Keton test strips
• Urine sample containers
• A blood pressure and heart rate monitor
• A symptom diary 

We are compiling a spreadsheet with instructions to enter monitoring results, which will be made available to our members. At any given time it is possible to print a table or graph and email or take it to your doctor. In case abnormalities are recorded, it is important to bring the glucose monitor and the BP / heart rate monitor with you to your doctor so you can calibrate the monitors with your doctors equipment to eliminate his reservation regarding the equipment. Even if there is a slight deviation and you have to add or subtract, the data curve still tells the tale.

The spreadsheet will be available to members by the end of December 2007.