Questions and Answers

Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia Syndrome (FMS):
Help! I'm confused, have little money and don't know where to start. What should I do? 
Please click here to find out about promising "new" (to this site) therapeutic options. 

What is your approach to the subject in this web site? 
The information given here about chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and fibromyalgia syndrome (FMS) is presented from the perspective of my own personal experience. It represents my current opinion and, no doubt, will be updated from time to time. Its purpose is to present material in a user-friendly manner to try and offer hope and help to sufferers of these confusing and debilitating conditions. It is not intended to be an authoritative work on the subject or a scientific paper.

Disclaimer: These notes are not intended to provide personal medical advice. Such advice should be obtained personally from a qualified health professional. If you have fibromyalgia or CFS I do not advise following any of the suggestions contained herein without first consulting a suitably qualified health professional.

What is the difference between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME)?
Currently nothing. They are different terms for the same medical problem. Since there are different causes for CFS, it may be possible in the future to use these terms for different specific conditions. But this has not yet happened. 

Are there any other names that are used for Chronic Fatigue Syndrome?
There are several. They include Post Viral Fatigue Syndrome, Tapanui 'Flu and Multiple Chemical Sensitivity. 

What is the difference between Chronic Fatigue Syndrome and just Chronic Fatigue?
Chronic fatigue means being tired for a long time. The word "chronic" refers to a long period of time rather than to the degree or severity of something. Chronic Fatigue Syndrome is a syndrome that is characterized by prolonged tiredness, but also by a variety of other symptoms including muscle pain and severe tiredness on minimal exertion, muscle pain and severe tiredness lasting for long periods of time following exertion, reduced concentration, poor memory, indigestion, bloating, constipation and/or diarrhea, headache, intermittent blurring of vision, tinnitus, frequent urination, emotional problems, sleep problems, poor temperature control and many others. There is a lot of variation in symptoms between individuals but the first two problems on this list (concerning exertion) are probably shared by all sufferers.

OK, I've just got chronic fatigue, not a multitude of other symptoms. What should I do?
It is possible, if you have not had it for long, that you could be in the early stages of Chronic Fatigue Syndrome (CFS). Untreated CFS sufferers tend to get more and more additional symptoms the longer they are ill. But you could well have one of the many causes of just plain chronic fatigue (prolonged tiredness). Many of these causes are also associated with a few (usually one or two) related symptoms. For suggestions on finding out the cause please click here: Chronic Fatigue. Unfortunately CFS sufferers may also have one or more of these causes of chronic fatigue in addition to the main factor(s) producing the actual CFS.

What is the difference between Chronic Fatigue Syndrome and Fibromyalgia Syndrome (FMS)?
Fibromyalgia is a condition characterized by prolonged and disabling pain or ache in the muscles (myalgia) and fibrous tissues (fibro). It is also referred to as fibromyalgia syndrome or FMS. In my opinion people diagnosed with Fibromyalgia usually have Chronic Fatigue Syndrome -- there is just a more noticeable muscle aching than the other symptoms.  For these people their condition is just one variety of CFS and it would be better to say they had Chronic Fatigue Syndrome (fibromyalgia type). 
People who have been diagnosed with CFS or fibromyalgia should be aware of other well recognized (usually rare) "orthodox" causes of muscle pain. See Causes of Persistent Muscle Pain and Cramps. 

What is the cause of Chronic Fatigue Syndrome/ME?
Officially the cause is still unknown. But there are MANY theories. It is a daunting task for a CFS sufferer to try and face the mass of information about CFS and try and apply it to their case. Many suggestions are expensive which is an added burden because most CFS sufferers are struggling financially.  Let me share with you the ideas that I have found actually make a difference in the majority of cases.

I think CFS sufferers fall into one of five categories:
  1. People that have an already recognized (orthodox) disorder that remains undiagnosed. 
  2. People that have Aldehyde Dehydrogenase deficiency/malfunction.
  3. People who have problems with "bugs".
  4. People who have several different problems that all add up to a CFS illness. 
  5. People who have a mixture of one or more of the above.
There is a sixth possible category called "the unknown disorder". But I have not included this as I cannot write anything about it! I guess there must still be some undiscovered disorders out there that could cause all the problems of CFS,  but I don't think there would be many who fall completely into this category.  

How do I treat my Chronic Fatigue Syndrome?
Please see the suggestions given under each of the five areas mentioned under the last question. It is most important to also see Basics of a Healthy Lifestyle.

Is it possible to completely recover from Chronic Fatigue Syndrome?  
I believe CFS is often a curable condition. By "curable" I mean a return to being able to cope satisfactorily and enjoyably with reasonable everyday activities. But of course this depends a lot on the cause.  I think sufferers should be encouraged to be hopeful for a good recovery but that they should be warned that patience and an ongoing commitment to a healthy lifestyle will be essential. As a general rule it seems to me that the younger a person is, and the shorter the time of their CFS before a suitable treatment program begins, the sooner they can hope for a recovery. But be warned, if you have got CFS because you have worked for a year at two jobs and only on 4 hours sleep per night, don't expect to go back to that kind of abuse once you are well. By the way, it should be mentioned that some people are very overworked for long periods when it is not really their fault. This especially relates to solo mothers. If you are a solo mum you really are going to need some friends, relations or day-care help to cope. The most challenging people to try and help are those who are elderly, have had CFS a long time, have little money to spare for tests and supplements, have ongoing stressful circumstances and who have other complex or severe, longstanding medical problems.

Do you have any specific suggestions regarding sleep problems?
The following is a list of different things you could try and there advantages and disadvantages (for other suggestions please see Basics of a Healthy Lifestyle under the section on Rest):

My interest deepened after realising that my personal battles with "burn out" had a lot to do with CFS issues. I don't believe I've actually suffered full-blown CFS myself but I have been in danger of it. I have suffered from mild CFS related to bugs and low mineral status. Believe me, I know what it is like to spend money on tests and supplements!

I am not a "walking encyclopaedia" on CFS. I do want to keep up-to-date of course. But there is so much information coming out that you could make a full-time job of studying it. This is one reason why support groups, where sharing of information can occur, are very important. I often learn things from patients I treat. I approach it on a very individualistic basis. I believe that a careful analysis of the history and clinical state of each sufferer is the key to unlocking their successful treatment.

What would you advise someone who is feeling confused, has little money and does not know where to begin?
First, please read my disclaimer above at the top of this page. In this situation I would suggest:

1. Make sure you have seen a good doctor and excluded possible "orthodox" causes as much possible. Have a blood test as a general check up and to exclude common cases of tiredness. 
2. I would try a weekly injection with vitamin B12 for 4 to 6 weeks. This should be organized through a doctor. The Methylcobalamin form works best BY FAR in my experience and seems to significantly help about 60 percent of patients I see at a dose of 10mg once or twice weekly. It is one of the most effective treatments and should be tried first in many, even if other forms of B12 have been used with no success. I have had people who have been sick a long time come to me who have never tried this therapy, and whom it helps significantly when used. You must have no folic acid deficiency when on B12 and a check of serum potassium is advisable as low potassium has been reported with parental B12. 
3. Next look under the promising "new" (to this site) therapeutic options listed at the bottom of this page.
4. If you are significantly intolerant to alcohol, and the above are no help, I would follow the advise given under Acetaldehyde as a cause of CFS.
5. If you are not significantly intolerant to alcohol, and the above are no help, then I would follow the advise given under "Bugs" and CFS.
6. For sleep problems, I would use one of the suggestions above under dr. bird, burnout solutions, anti-ageing, cfs
7. Remember "The Basics":
   a. Clean up the diet as much as possible. No refined "junk food", sugar, caffeine, chocolate, alcohol, rich pastries, pies and the like. Most people will do best eating mostly vegetables, fruits, legumes, and nuts/seeds. Avoid artificial sweeteners such as aspartame.
   b). No smoking. 
   c). Plenty of good quality water - aim at around two litres per day.
   d). Have any prescription medication reviewed to see if it may be a cause of fatigue or muscle ache. Do not stop prescription medicines without the doctors advise.
   e). Try and get some exposure to sunlight on your skin regularly while being careful not to burn.
   f). Try and modify your lifestyle so as to promote restfulness. Getting better from CFS is like having a period of convalescence. 
   For a more detailed look at "The Basics" see Basics of a Healthy Lifestyle.
8. As you can, read through the rest of this web site and look for further things that may apply to you. 

PROMISING "NEW" TREATMENTS:

1. Use of IV saline can be read about at http://virtualhometown.com/dfwcfids/cfids/treatment.html#lowblood  and involves the work of Doctors David Bell and David Streeton on treating patients with normal saline IV infusions (e.g. 1-2 litres once a week) to treat low blood volume. I have had great results with this. If a patient is thirsty all the time and tends to have a low blood pressure that drops on standing then this treatment should be considered very seriously. Also see: http://www.ncf-net.org/forum/voumefall.htm and http://www.wicfs-me.org/newpage1.htm 
2. Visit the www.hemex.com site and check out their theory about pathogens or toxins causing an immune problem in predisposed people that results in "thicker" blood. Dr. Bird has been having some very promising results using heparin therapy ("Clexane" 50-60mg per day by subcutaneous injection). You cannot have this therapy if you have a bleeding disorder, so you must have tests by a physician and be under their care.
3. The presence of chronic neurotoxins should be considered too. Please visit www.chronicneurotoxins.com. Use of the chlolestyramine for these patients can be very helpful. Out of about 12 patients tested, I have only had 2 who appear positive. I am still awaiting to see how they go with the treatment.
4. Use of glyconutrients. They are very health-promoting, see www.glycoscience.com. I suggest avoiding expensive supplements and multi-level marketing and considering the glyco-nutrient powder and jam recipes. 
5. The substance guaifenesin (guaiphenesin) looks very promising for those with muscle pain. Try doing a search on this.

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