you refused the comment why?

I really appreciate your efforts to study this horrible illness and it makes a lot of sense based on other scientific research I have read. I am willing to participate in any study etc. to accelarate the progress for a solution/remedy of this disease. I have tried to get into Ampligen studies in my area (I am even willing to pay myself) but I am always told that they are closed, not active etc.

I am so desperate that I have written to Dr. Phil for help but never received a response. I am attaching my letter to provide you with my history of what I was like before I suffered from CFS and what I am like now.

September 30, 2005

Dr. Phil Show (also sent via email on 09/29/05)
5482 Wilshire Boulevard #1902
Los Angeles, CA 90036

Dear Dr Phil,

I am a 45-year-old female writing to you in hopes of seeking your help. I am a sufferer of Chronic Fatigue Syndrome for approximately 4 years. The best way for me to describe what has happened to me as a result of this illness is to tell you about myself prior to this illness (before September 2001) and then to describe myself after the onset of this illness.
My entire life I have been a high energy, highly motivated, spontaneous, driven, athletic, ambitious, spirited person who craved energy, ideas, problem solving, and most of all getting up early in the morning to start the day. Professionally, I was an early achiever although I never considered myself the genius type. I always love to work long and hard, great at multi-tasking and was very successful in the work environment (a bit of a workaholic). I am educated with an MBA and I have achieved because of my innate energy, enthusiasm and an inner voice that told me I could accomplish almost anything I put my mind to. Physically I was above average in looks and figure, looked and felt very strong and healthy. I did many athletics such as run, bike, tennis, ski, equestrian riding, work out at the gym, always kept fit, enjoyed meeting new people, going out socially and always cared for and extended myself to others. In order to do such things my day usually started at 6:30/7:00am and ended at 11:00pm and I felt great and could not wait to wake up again the next day and start all over. My family and personal relationships have never been at par with the other aspects of my life but I never allowed that to drag me down. I have encountered many difficulties in my life prior to my illness such as a terminally ill father, who died when I was in my twenties, problems/breakdowns among my family members, in my late thirties I was married and divorced in a short period of time and professionally I attended the school of hard knocks. Prior to my illness, because of my energy and attitude, I always endured these difficult times.
Now I will tell you what has happened to me beginning in September 2001. I feel it began as a result of getting very worn out from no down time, frequent job travel, ongoing stress from job, family and personal relationships, with no one to look after me at the end of the day, care for me and encourage me to take it easy. I began getting sick all of the time with strep throat, swollen glands, fever, bronchitis, and colds but still did not take time off to rest. As time went on, this became chronic. I went to the doctor and was diagnosed with MONO/Epstein Barr Virus and was told to rest, but I did not because my position/job did not foster my taking care of myself and my family (Mom) always saw me as invincible. As months went on, I started to feel very physically tired, my entire being was fatigued and I had to sleep at least 10 to 12 hours a day and still force myself to get up. I felt like I was in a Coma and even after waking up I was still so mentally and physically fatigued. When I tried to exert myself physically, my body felt so heavy I could not exercise. Although I started to sleep more, people at work and family were always telling me how tired I looked and that I looked very unhealthy. Every night when I went to sleep I believed I would be back to feeling normal the next day. Since this was not the case, throughout the year 2002, I proceeded to go to more doctors and had all kinds of blood tests done but they could not find anything wrong in the blood tests. By January 2003, I stopped working/left my job (was some what pushed out since the work horse could not operate at 200%) but I felt this was a good thing because it would allow me to take as much time as I needed to take care of myself to get better. I was convinced that at the most I would be back to normal in a year and this would just be another episode in my life that I would endure and get through. As time went on I got worse (more mentally and physically fatigued) even though I had stopped working. I was still sleeping 10 to 12 hours a day, did very little exercise, did not exert or push myself to do anything that I was not up to. I was always in a mental fog especially if I needed to think something through, read or make a decision. I barely had the energy to take a shower, dry my hair, get dressed, make coffee or cook, go to the supermarket, talk, lift my arms, move my legs, read, drive, and I lost my cognitive aptitude. All of the things that use to make me feel good or gave me energy or an adrenaline rush now did the opposite. The only thing I felt I could do was to sit on the couch and watch TV (that is how I learned and started watching your show).
Over these years, I have been to every type of doctor(s) in hopes of some type of resolve such as Internist, Infectious Disease, Rheumatologist, Endocrinologist, Neurologists, Hematologist, Acupuncture, Chiropractor, Naturopath, Nutritionist and I have been on every supplement, herb, remedy, diet, thyroid hormone, most antidepressants, took tons of tests and received no hope or resolve. I just seem to get worse with less intermittent periods of feeling good and/or none of these practitioners seem to care or believe that Chronic Fatigue Syndrome/Chronic Epstein Barr Virus is a real illness. They make you feel worse by either giving you false hopes in an effort to selling you all sorts of stuff until they have sucked up your money, or they push you off to the next doctor because they don’t want to deal with it, but most often they tell you that your are chronically depressed and you need to take high levels or multiple antidepressants, which for me is the most insulting of all. Yet when you provide them with research, studies or information on this subject with treatment protocols that have been used, whereby results have been noted, they will not even read the data or research and insist that it is not credible.
During these past four years, everything I described myself as above is the complete opposite of what I am now. I have completely lost my authentic self as a result of this illness, especially since I don’t have the cognitive aptitude or energy that I once had to help myself. Over the years, I felt better for a week or so and I was so excited because I thought I had beat this horrible illness and then it is as if the energy you exerted because you were happy is enough energy to destroy you again. It does not matter what type of energy you exert, positive, negative, physical or mental; any energy or output, stress or decision-making is toxic to someone suffering from this illness. The other irony of this illness, because of its vagueness, lack of medical acceptance and overall understanding and awareness, is when you do make yourself do things, people think you are not ill and feel you are making it up and yet when you don’t do anything they think you are just not trying hard enough to get better. Also, since I do not look as tired as I use to since I sleep and rest as much as I need, people think you are fine. Yet, if I dare to get out of bed before 9:00am or perform more than one task in a day, I will be non functional for the next week or I will get sick. No one cares or understands because outwardly you are not dying, but internally you really are because you are so limited physically, mentally and emotionally, in every aspect of your life.
My life has completely changed since stricken with Chronic Fatigue Syndrome and I have a hard time remembering the person I use to be and whom I so admired. I have never been able to go back to work and if I could, how could I ever get a job after being out of work so long- no employer would ever understand-especially at my age. I have no real friends anymore, I have no hope for another male relationship, and I am not sure how I will live going forward after my savings have been exhausted. No one wants to hear about my illness or feelings, they just want me back to the person I was. I have no real support system and I am very lonely and of course depressed as a result of this and the way my life has now turned out. I really have nothing going for myself (Professionally, Financially, Personally, Emotionally or Physically/Heath). What keeps me going is that I have horses, which I still try to ride as much as possible. I am struggling to keep and maintain them since it is financially draining me in the long run, but I will not allow this illness to strip me of everything. I also have a beautiful dog that gives me love in spite of my illness.
I am not sure if I adequately described my situation and request for your help since as a result of this illness it is very hard to put thoughts and words together. I am asking for your help because there is some research of intravenous antibiotic therapies or anti viral medications being helpful for patients with this illness. There is also a drug called Ampligen in Phase 3-clinical studies, which is being administered and used by some doctors for patients suffering from CFS. After four years of searching, I cannot seem to find the right medical doctors who are open minded and willing to consider these treatments for me or when I write to certain doctors, I do not hear back. It also takes more energy than I have to research, call and make appointments to see many doctors and hope one of them will work with me and I do not have a support system who can do this leg work with me. Therefore, I would be so grateful if you could work with me to seek out a medical professional who will help me and whom I can trust will be since in their efforts to help me. This would also give hope to the many sufferers of this illness, who may have never wrote to you to ask for help because they are to fatigued to do so or have completely lost hope. It has taken me over a week to finish writing this letter to you and after each attempt; I need to spend the remaining part of the day resting.
Please consider helping me Dr. Phil.

Well done to Ben Goertzel and his team! What would be most curious is to examine the relationship that may exist between CFS and RSDS. Both appear after some trauma/extreme stress condition, with some confusion between these and fibromyalgia or general Chronic Pain Syndromes; more women than men appear to be affected by both maladaptive conditions. Work like this takes the stigma out of 'invisible' disorders that severely impact our ability to function in society as 'smarts'; the means with which we are enabled to do so may be closer now because of the computational patterns harnessed - perhaps in the future environments will be structured so as to allow us to contribute meaningfully towards knowledge and understanding without the current tremendous personal cost to us as sufferers. Thank You, Ben. -- The Meggish One.

I've had CFIDS since 1990, the results of this new research make complete sense to me. I have learned to get comfortable with CFIDS, to take really good care of myself, to grow emotionally so that fewer aspects of my life are stressful, so that now I am able to live a relatively normal life. I gave up going to Drs. for help because they never seemed to have any.

Barrie Mason

Now that we have this information, what is the next step. How can we apply this to CFS patients. I realize that there is no cure or treatmenmt at this time but is there anything we can do to ease the symtoms

Now that we have this information, what is the next step. How can we apply this to CFS patients. I realize that there is no cure or treatmenmt at this time but is there anything we can do to ease the symtoms

Hi EveryOne,

I don't have all the answers but I have found one piece of the puzzle. In the article they mentioned problems with Cortisol receptors. In the "Safe Uses of Cortisol" a wonderful book by Dr. Jefferies he discusses how physiologic doses (small amounts of Cortisol to support the adrenals) can help. I have found that to be true. The combination of Thyroid Hormone, when needed, and Cortisol can go a long way to resolving many CFS symptoms...

Thanks Beverly for your suggestion, I will certainly look into that. Does anyone have any suggestions of what type of doctor we should go to. I have tried many different specialists but none really know that much about CFS. It would be great to go to a doctor that really knows and understands all the problems related to CSF

Its encouraging to read of research like this. Our now adult son suffered from CFS for five years and lost much of his childhood and education. He has fully recovered in the care of an enlightened specialist using a strict rehabilitation regime and tlc. If anyone reading this blog would like to try this recovery method our specialist's website is on line on www.me-cfs-recovery.co.uk (for patients) and www.me-cfs-treatment.com (for doctors). We continue to support this doctor's patients as he has helped so many over a period of over twenty years and has long felt that an inherited tendency is implicated along with one's ability to cope with stress.

i am a 32 year old male i have this horrible disease chronic fatigue syndrome and it has made my life miserable. i can totally identify with the 45 year old female that posted her condition. i used to be energetic getting only 6 hours asleep a day and waking up fully awake,now it is up to 10 to 12 and when i get up i just wanna go back to bed. went to the docs and had some blood work done and found out my liver enzymes were elevated, did more test and they found that i had a condition called non alcoholic steahepitosis he also stated that it is rare for me to have this codition since i was very athletic and have a slim build. furthur test were done to see what was causing my liver problems and they came up with everything negative " hep abc all negative, but however i did have high levels of the epstein barr virus, i am now scheduled to see a immuniologist. as of now i am getting worse since the symptoms started appearing about a year ago, my life at home and at work are deminishing rapidly i am very lucky to have a job that i can sleep at otherwise i wouldnt be able to make it, it is just a matter of time before my sgt will catch me. my ability to think and remember have gone out the window. my eyes are always red people at work accuse me of smoking pot because i look stoned all the time, my urine is of a dark yellow color and has a weird smell to it, sometimes i can barley move it feels likes its 3 am everyday. i have also researched about this virus and it seems like i better start planning my funeral but as of right now my main goal is to get a lawyer to discuss possibly getting on disability but from what i hear about cfs is that they frown on this and think that the person is lazy and just doesnt want to work. i used to be gung ho work freak now i seem to be the laziest person at work. it seems right now i might have a few months before i collapse in dispair and quit work and hopefully get on disablity and if i dont i see the nightmare of my dreams coming true and ending up on the street after i have drained what i have saved up into retirement.

I have just had a series of blood tests done, and yesterday my doctor told me that I have Epstein Barr Virus. I have been cronically tired for months. I can only work part-time. Since I just learned about having Epstein Barr Virus, there is much I don't understand. In reading about EPV on the Internet, I've read that a great majority of the population have this virus. So, why does it effect only some people with extreme fatigue? I am suppose to see my regular MD next week. Any information concerning Epstein Barr Virus//Cronic Fatigue Syndrome would be greatly appreciated. Blessings to you all.
Kate

My daughter started developing CFS about 5yrs ago, she is now 16yrs old. She has not been able to attend school for almost 2yrs and is now house bound. She finds it very difficult to function on a day to day level even with the smallest things. It is heart breaking watching her suffer, this is compounded by the general lack of understanding of her problem by friends and doctors alike. The last visit to our doctor she was advised to pull herself together and stop being so lazy. This is hardly the sort of comments you need when you are already struggling. We have tried all sorts or treatments, right now she is under going chelation therepy. I am not sure that it is changing anything though. There has to be a center that deals with these patients. Someone to take them seriously and find a way forward back to life.
Carolyn

Ive had chronic fatigue for over 6 years, it started after a severe viral infection and i havent been the same since. I take about 30 different supplements every day. The things that i have found that help me the most are supplements for detox. I recently started a heavy metal detox using ETDA suppostories this has problby helped me the most out of all the supplements i have taken so far. I'm also on the Garth Nicholson anti-biotic protocol, which ihave been on for about 9 months. You jus have to work had and fins out what works for you, everyone seems to be different and responds to different treatments.
good luck
jim

Dear Sir or Madam, I have just read LL's letter to Dr Phil written April 23 2006 And I will like her to email me is possible. I have had CFS since 1996 Sept, then Insulin Dependant Diabeties following Coeliac Disease (Wheat Intollerance) I empathise completely with LL that it is a battle, I also had the same experience of being a power horse, to now a plodder. My sons are now 22 and 26 and they have found it difficult to believe as some days I can excel myself but then fall over from overdoing it. Today I am taking my Son Paul 22 to the Dr as he now is Chronic Fatigue he has worked very hard with his Personal Training career and had enormous energy to build up the muscles he has. I am hoping it is just burn out? But after reading some of these articles it may run in the family. 2003 I also was retired early from RPH where I worked as a Receptionist. After that my Mother became terminally ill and I was blessed to spend quality time with her. I will like to hear from LL or anyone else who is a expert on this Condition. I see a Val Allen at Perth Natural Clinic and she has been my saviour. In Sept 96-97 I had 13 scripts for antibotics due to repeat infections. After then Val put me on Calcium Ascorbic Acid a non accidic form of Vit C, Tresor B's, Iron,Magnesium, Calcium, Potassium with Vit D, Blackmores S.C.F and P.C.I.P I additionally take Kelp, Vit A, Vit E, Zinc with Picolinate But the most important is the first four.I tried recently going to the gym everyday then cut back for a Living Longer and Living Stronger routeen but had no energy to maintain my home stuff. I have the mind set to beat this but the body is not always willing. OH I have found that if I am ever low in Magnesium my arms ache badly. Back in 2002 when I was experience some workplace stress from white anting me, My magnesium levels became extremely low during a stressful altercation that It prevented my legs to carry me and I will collapse. After a wheelchair took me to the emergency room and I rested I later could walk. Drs did not test the mag levels but the next day I had my personal dr do and it was low. I wish you all the best and hope to hear from someone. Kind Regards Marg 0418 944422 margaretgoode@hotmail.com

[Editor's note: a third party's name has been removed from this post at their request]

Margaret,
I will contact you as soon as I get the energy. I am going through a very bad time now(worse than ever) with this illness and the stupidity/ignorance of the medical establishment and the phony Dr. Phil's of the Media world.

Right now all I can say is to look into Dr. Montoya's trial on the Immune Support website regarding Valcyte- URL attached. I feel he is on the right track if your situation started from some type of virus such a Mono/Epstein Barr(that is the direction I am headed now). His trial is run via Cortney Hischier, send email to her at stanfordtrial@hhv-6foundation.org
Also Ampligen which is not yet approved in the US, but offered by 3 physicians in the US at your cost. I cannot relocate (which you must do for 1 to 2 years with Ampligen) since I need to sell my home first and I have no help at all with anything. These are the only possibilities at this point. Nothing else works, unless you resign yourself to bed rest, no stress, no life, live in a bubble for the rest of your life.
It is very depressing because we don't die from it, we just suffer from it on a daily basis and the more you fight it, which I did and still try to do, the more it fights back and destroys you even more.

Also, just about every type of physician you go to will pretend they want to treat you, take what money you have to pretend they will get you better and then ditch you as soon as you are on to them or they run out of phony treatment protocols/vitamins etc.

Hello,

I am looking for an attorney to file an appeal for my disability claim for CFIDS which was denied by AETNA.

Does any know agood attroney.

Thanks for your feed back

Gayatri

Minnesota Chronic Fatigue/Fibromyalgia Association
www.cfsmn.org
Iris Park Place #25,1885 University Ave W, St. Paul, MN 55104, 866-644-4975, 651-644-4975, fax 651-644-3023

We are all accumulating toxins faster than ever in history, not only metallic elements, but additives devised in laboratories for which we do not know the long term effect. I have even heard that suntan lotions contain micro molecules, that once absorbed, can get past the brain barrier. Sometimes, we are too inventive for our own good.