Remember Michelle Akers?

[MeSci]

I think we were at cross purposes, MeSci, it was the comment from Judy I was asking about.

"I'm basing this on what Dr. John Chia told me, and his articles on the Internet. His research, plus similar prior research in the UK identified CFS as an enterovirus that lives deep and hidden in the stomach wall. He said CFS is absolutely not an autoimmune disease."

the "similar prior research in the uk" was what interested me.

I did find this on a general search - which seems to confirm that leaky gut isn't something mainstream or taught in medschool, or is even something very much is known about.
Not a chance of getting something like that investigated here!

http://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome

I have given up getting things investigated, and have done my own investigations instead, and acted on them! Very glad I did.

 

[peggy-sue]

"I have given up getting things investigated, and have done my own investigations instead, and acted on them!"

Me too, not that I've had any investigations beyond the most basic of blood tests; one test for lupus and another (which I don't trust) for Q-fever (I have a home office cert. for having been infected by that at work).


I haven't gone for leaky guts though, it doesn't seem right, for me.

 

[xks201]

There is no one cause to this disease. She was probably overtrained and crashed her hormone system. Now she's probably on replacement hormones and is normal. If it was some miraculous difficult to diagnose thing I'm sure she'd have more motivation to talk about it despite what the news would have to say about it.

 

[rosie26]

xks201

I didn't think it was known if there was" A "cause or "DIFFERENT" causes for ME. If it is widely known then what are they. ? Otherwise isn't it just speculation ?

 

[caledonia]

Fascinating! It sounds like doing a methylation protocol in conjunction with taking the herbs to kill off the enterovirus would be productive. (see part 3 of the video).

Caledonia, have you taking the methylation lab tests?

Sorry Ayaju, didn't see your question. Yes, I've taken both SNP and functional tests for methylation. Definitely screwed up.

If you put an @ in front of the person's name, like I did above, they will get an alert message that you posted about them.

 

[xks201]

xks201

I didn't think it was known if there was" A "cause or "DIFFERENT" causes for ME. If it is widely known then what are they. ? Otherwise isn't it just speculation ?

ME is not a disease it is a diagnosis (a group of symptoms). Tell me how many things you can think of that would make someone tired and dizzy. I can think of a lot of things. A lot of genetic mutations. A lot of hormone deficiencies. A lot of food allergies. So there isn't one cause to a diagnosis. lol

The body is a unified system. How therefore could there be one cause to a diagnosis like brain inflammation? You are basically making it impossible to cure by 1) labeling it as a disease 2) claiming that there is no cause or different causes, whatever that means in relation to a non existent disease. It's a diagnosis, I don't care whether you call it CFS or ME. They are both a diagnosis, not a disease.

 

[rosie26]

xks201
So what you are saying is that we have an illness that has been put into the ME/CFS box and there goes all the people with chronic fatigue, PEM, inflammation, dizziness, flu-like symptoms that haven't recovered from, people with burnout from over exercise, and people with other undiagnosed fatigue illnesses etc . And that is why some people seem to recover and some people do not. I think I get what you are saying.

So yes, there are different causes when taking into account the varieties of illnesses lumped together under the ME/CFS umbrella.
But those of us who have experienced the illness that we call ME because we have no other name for it, I think most of us would feel there is one cause ? It feels unique to me. Anyway thanks xks201, Be interested to know if I got you lol

 

[xks201]

Yeah well unlike most of you here I have formal training in chemistry and medicine and have spent hours upon hours doing research on pubmed and through different holistic medicines like chinese medicine on top of genetic and vitamin analysis to complete a picture of what is exactly causing my symptoms.

If you want to sit back and say you have some exotic disease because you haven't done the proper testing and possibly research then that's why you aren't cured.

This was not directed at you by the way. I see this viewpoint of (oh we have a unique disorder) all over the web. It's not unique, it's simply the result of doctors practicing ignorant half assed medicine that doesn't properly test vitamins, minerals, hormones, and genes.

The first thing a doctor does when he is either too lazy or careless to treat a patient is go for a broad diagnosis like autism, irritable bowel, or ME/CFS. Think about it. If you walked out of there and your doctor just said "I have no idea what is wrong with you", how long do you think that doctor would be in business? It's common sense that they would use those excuses.

 

[Undisclosed]

xks201

ME is not a disease it is a diagnosis (a group of symptoms). Tell me how many things you can think of that would make someone tired and dizzy. I can think of a lot of things. A lot of genetic mutations. A lot of hormone deficiencies. A lot of food allergies. So there isn't one cause to a diagnosis. lol

Generally, the term disease broadly refers to any condition that impairs normal function, and is therefore associated with dysfunction of normal homeostasis. ME, therefore, is a disease. Every illness on the planet is defined by a group of symptoms.

ME is more than being just 'tired and dizzy'. Take a look at the ICC. It's not about being 'tired and dizzy' and it is common for those who don't understand ME to confuse ill health causing chronic fatigue with the neurological disorder that is ME. The waters have been so muddied with the label CFS and I think we are all tired of the press, doctors referring to ME and then end up talking about chronic fatigue and all the mulitple causes of fatigue. ME actually has little to do with fatigue. Genetic mutations, hormone deficiencies, allergies can all make you tired and dizzy, so can Cancer but if the tiredness and dizziness is caused by one of these things than ME is not the proper diagnosis, is it? People with genetic mutations, hormone deficiencies, allergies don't get PEM/PENE, do they? It's also possible to have all these things and have ME, isn't it?

The body is a unified system. How therefore could there be one cause to a diagnosis like brain inflammation? You are basically making it impossible to cure by 1) labeling it as a disease 2) claiming that there is no cause or different causes, whatever that means in relation to a non existent disease. It's a diagnosis, I don't care whether you call it CFS or ME. They are both a diagnosis, not a disease.

Call it what you want. Define it as a diagnosis or a disease or whatever you want. Most of us do care because how it is defined has huge ramifications for patients. ME is not just a diagnosis -- it is a life altering illness that people are dying from. People don't die from diagnoses, they die from diseases. People don't die from tiredness and dizziness.

Yeah well unlike most of you here I have formal training in chemistry and medicine and have spent hours upon hours doing research on pubmed and through different holistic medicines like chinese medicine on top of genetic and vitamin analysis to complete a picture of what is exactly causing my symptoms.

I think there are many members here that have formal training in the sciences. I do and it gives me no special knowledge over anybody else. We know what we know from doing our own research and it matters little if one has formal training in any science. Connecting the dots does not require a specific education in anything.

If you want to sit back and say you have some exotic disease because you haven't done the proper testing and possibly research then that's why you aren't cured.

Perhaps people aren't cured because as of yet there is no cure. Even with the 'proper testing' to rule out other serious disorders and even with researching something to the nth degree, there is no cure. Perhaps, you have some confusion over symptoms that produce chronic fatigue that are amenable to various treatments (eg fatigue caused by a thyroid malfunction can be ameliorated by the proper doses of thyroid medication) versus ME. Blaming a person for remaining ill because they haven't done enough is inappropriate.

 

[xks201]

First of all I didn't blame anyone here for the cause of their illness. I said the testing has to be done to eliminate certain factors. Variables I mentioned will cause ME symptoms. The body is a unified system where when one system is off the entire thing can be off. You are expecting there to be one cause for your organic disease. I'm sorry to tell you that there isn't one cause for this term "M.E.". If there was one cure then there would be one common blood or x ray or mri finding. I don't see you posting your test results for vitamins, minerals, and hormones. You are assuming doctors are checking all of these things in everyone with the ME diagnosis who hasn't been fixed. And that definitely isn't the case. Do you even replace your estrogen or anything? It's easy to throw your hands in the air and say there is no cure...but there are multiple causes to just about any disease. Why would ME be any different?

xks201



Generally, the term disease broadly refers to any condition that impairs normal function, and is therefore associated with dysfunction of normal homeostasis. ME, therefore, is a disease. Every illness on the planet is defined by a group of symptoms.

ME is more than being just 'tired and dizzy'. Take a look at the ICC. It's not about being 'tired and dizzy' and it is common for those who don't understand ME to confuse ill health causing chronic fatigue with the neurological disorder that is ME. The waters have been so muddied with the label CFS and I think we are all tired of the press, doctors referring to ME and then end up talking about chronic fatigue and all the mulitple causes of fatigue. ME actually has little to do with fatigue. Genetic mutations, hormone deficiencies, allergies can all make you tired and dizzy, so can Cancer but if the tiredness and dizziness is caused by one of these things than ME is not the proper diagnosis, is it? People with genetic mutations, hormone deficiencies, allergies don't get PEM/PENE, do they? It's also possible to have all these things and have ME, isn't it?



Call it what you want. Define it as a diagnosis or a disease or whatever you want. Most of us do care because how it is defined has huge ramifications for patients. ME is not just a diagnosis -- it is a life altering illness that people are dying from. People don't die from diagnoses, they die from diseases. People don't die from tiredness and dizziness.



I think there are many members here that have formal training in the sciences. I do and it gives me no special knowledge over anybody else. We know what we know from doing our own research and it matters little if one has formal training in any science. Connecting the dots does not require a specific education in anything.



Perhaps people aren't cured because as of yet there is no cure. Even with the 'proper testing' to rule out other serious disorders and even with researching something to the nth degree, there is no cure. Perhaps, you have some confusion over symptoms that produce chronic fatigue that are amenable to various treatments (eg fatigue caused by a thyroid malfunction can be ameliorated by the proper doses of thyroid medication) versus ME. Blaming a person for remaining ill because they haven't done enough is inappropriate.

 

[Gypsy]

xks201

Myalgic Encephalomyelitis "M.E." is NOT just a "set of symptoms"

Please read this website and educate yourself.

http://www.hfme.org/

http://www.hfme.org/metheshockingdisease.htm

http://www.hfme.org/methemedicalfacts.htm

Do drama. No fighting. Just spreading information. A little knowledge is a dangerous thing.

No one on here has "given up" brother. Most of us are continually learning and researching and looking for answers. 95% of the things that have helped me, I found by doing my own research, often with the help of Phoenix Rising and other message boards, reading medical reseach, and by speaking with others and seeing what has helped them.


Spread the love people and love your fellow suffering men and women.


P.S. A lot of people on here CAN NOT "run every test they can" because often outside the US/Canada, most people are given a CFS diagnosis and that is it- they are not allowed to have any further testing! It is prohibited. They only get CBT. If they have NO MONEY, or are too ill to travel, they have virtually no hope in getting all of the proper tests. Many people outside the US/Canada can not even get a simple Vitamin D test! Let alone major hormone testing. Some have to beg for a simple TSH test. Getting medications prescribed can be even more difficult, if not impossible! If their GP thinks they do not need a medication....they will not get it. Many can not even get referrals to specialists (it is not like in the US where you can go see pretty much any doctor you want to see, as long as you have the insurance or cash to pay for it).

Severe illness+No Money+ Living in a country that considers CFS to be psychological= very little hope. THIS needs to change! You are LUCKY to be living in a country where you have the access and financial means to discover what was causing your symptoms. So much of this illness is the luck of the draw. I am glad that you are better now. I am glad whenever anyone finds a way or ways to improve their health.

Many people are in dire situations because they do not have the access to have a lot of tests run. Some people who are given a CFS are even labeled as being "health obsessed" by their doctors and are refused any further tests because their desire to get to the root of their problems is viewed as a psychological preoccupation and "bodily distress" and they are forced into CBT and GET. This, is many peoples reality, so please try to acknowledge this. Everyone...wants to get better. We are all trying.

 

[iamnotmyillness]

I dont think we can ever expect sports people to go around much and tell people how they had this illness if they recover. They have to get picked for teams or whatever, things which could impact them if they consistantly went arouind telling everyone how sick they were. They more then any of us would need to get across how well and in good health they are (not to be telling people they had a mystery illness which could hit them again at any time). It just isnt in the best interest for their careers.

In fact, Michelle Akers spoke and wrote about having CFIDS for years to include publishing a book accounting the difficulties of living with the illness. She was diagnosed with BOTH Epstein-Barr Virus and Chronic Fatigue (then referred to as) Immune Deficiency Syndrome. She retired from her life-time passion and career of soccer in 2000, which was her ONLY focus in life. She ate, trained and slept, that's it. You should understand that from also living with the condition. I understand that from having to give up my passion in 2003. I also understand that sometimes I would rebuild energy and would be tempted to return to my passion. Some people return to work or are able to do some things in limited capacities.

Michelle Akers chose to return to soccer this year, 13 years after walking away. She may or may not choose to talk to the press about her illness still, but each interview shouldn't be expected to be a biography to include all of her causes. Just because she might not speak about her charity work with rescuing horses or of any other topic does not mean they are not important to her. For any one of us to speak idly about what any person with ME/CFS, or any other invisible illness for that matter, feels or imply they aren't experiencing the same things we are is detrimental to our cause. We should all be supportive of one another, otherwise we are just the same as any other person who has disbelieved us and called us a malingerer.

 

[Hope123]

Like everyone else Michelle Akers is entitled to a private life and while I would love it if she could be more outspoken, I don't expect it of her or anyone else also. But before I ask/ expect someone to do something, I ask myself if I am willing to do it and I am.

It's everyone's personal decision so I'm not judging the posters above (some people can't tell because of work or because they face a lot of rejection from family; I don't have those obstacles to the same degree) but I chose to tell most people who know me what I have when it's the appropriate time and context. I've been sick long enough that even if I got well suddenly tomorrow, people would be wondering why I've been relatively absent for 7 years, especially given how active I was pre-CFS.

So I tell people; I especially make it a point to tell scientists and healthcare professionals I meet for ME/CFS research/ advocacy purposes since my area of work was not close to ME/CFS pre-illness. I do it in the context of explaining why I am interested in this field but an intentional side effect is that so they realize physicians and scientists also come down with this if they hold any pre-conceptions that only lazy, crazy, middle-aged, emotionally sensitive women do. I am far from any of the latter except I am female! (I should mention I also look forward to the day you can be all of the above and still be treated appropriately for ME/CFS much as you would be for high blood pressure.) So far, I have not received any negative responses from anyone; maybe they're talking behind my back but at least they know better than to challenge me directly. People respect me for standing up for myself.

A long time ago, before I became ill, I read somewhere that if one is different from a mainstream group and takes it in stride, neither asking for pity nor apologizing for who they are, it makes the mainstream group more comfortable and willing to accept that person on their own terms because that person has accepted him/herself so totally and confidently, warts and all.

 

[Wayne]

There is no one cause to this disease. She was probably overtrained and crashed her hormone system.

That would be my best guess as well. Perhaps a severe case of overtraining syndrome.

Common Warning Signs and Symptoms of Overtraining Syndrome

• Washed-out feeling, tired, drained, lack of energy
• Mild leg soreness, general aches and pains
• Pain in muscles and joints
• Sudden drop in performance
• Insomnia
• Headaches
• Decreased immunity (increased number of colds, and sore throats)
• Decrease in training capacity / intensity
• Moodiness and irritability
• Depression
• Loss of enthusiasm for the sport
• Decreased appetite