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Wackers34
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Date Joined Apr 2013
Total Posts : 694
   Posted 7/26/2013 11:25 PM (GMT -7)   
Ive read so many different contradicting reports. Is CFS the same as M.E? What is the difference?

Thanks for clearing that up for me :o)
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/27/2013 12:08 AM (GMT -7)   
Yes, ME & CFS are exactly the same thing which is why you will see in articles as M.E./CFS. ME (Myalgic Encephlomyelitis) is a name that people who suffer with this illness have been promoting because CFS is such a vague name & doesn't really show the full illness, it just says fatigue. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/27/2013 1:01 AM (GMT -7)   
thanks...I read one report that said they are not the same M.E is inflammation of the spinal cord and brain and can cause damage to all of the major organs in the body...Most people with M.E have CFS, But not necessarily everyone with CFS has M.E?

I also have a friend who had M.E back in the 90s and she is now in remission...she said they are not the same even though they share a lot of the same symptoms.

But most places you read, say they are the same...including PVFS...Thats why I was confused and wanted to hear what everyones experiences were.

xx
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/28/2013 12:20 PM (GMT -7)   
While a lot of people and organisations call them the same, it's still up for debate if it truly is.

There's a lot of people who have chronic fatigue, but have it caused by other issues or illnesses, whether explained or not. More of a syndrome.

ME is a distinct disease.

The best comparison between the two is found on this website

http://www.hfme.org/comparisonchart.htm
/
Newly registered contributer/member, but long time lurker/reader.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/28/2013 4:10 PM (GMT -7)   
Kayla, I have CFS which is not chronic fatigue, it is an illness. I am not just chronically fatigued, I have many symptoms that go along with it, I feel like I am exhausted all the time but I also have flulike symptoms that can keep me down for days. I have body aches, memory & cognative problems, swollen glands, nausea & a malaise that has me in bed for days after exertion. I don't get true refreshing sleep & somedays feel like I didn't sleep at all. This is exactly why we have been pushing for a name change for years, it is why we are not listened to by doctors, it is why our families think it is all in our heads & we just have to pull ourselves up by our bootstraps & get on with life. Chronic Fatigue Syndrome is not just fatigue but an illness that is now looked at as possibly an auto immune disease not of the T cells like others but of the B cells. My daughter has Lupus, Scleraderma, Myocitis & RA, one of her symptoms is chronic fatigue but we see a major difference in our fatigue even though both of them are chronic, the syndrome is definitely a separate illness. Another thing researchers are looking at is mitochondrial disfunction & this research is looking promising. There is a lot of confusion about CFS & we have been trying to get the truth out there so we will be heard. I hope this helps, a lot of the old articles on the web do say they are the same but that is old school thinking & quite a bit has changed since, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/31/2013 7:19 AM (GMT -7)   
Yes there is certainly a difference between chronic fatigue and chronic fatigue syndrome.

Just as there are many causes of chronic fatigue, and many causes of chronic fatigue syndrome.

ME is a step up from CFS.

Someone with chronic fatigue (not CFS) cant say they have ME.

Just as someone wth chronic fatigue syndrome cant say they have ME if it is infact caused by other things that havent been investigated as possible causes.

Im all for CFS and ME, certainly not siding with doctors and doubters. Just saying that there's different levels of severeness.

Jewelrylady/ Denise - Did u ever get tested for lyme and coinfections?
/
Newly registered contributer/member, but long time lurker/reader.
Full time researcher and freelance writer.

Deniclair
New Member


Date Joined Aug 2013
Total Posts : 7
   Posted 8/12/2013 12:53 AM (GMT -7)   
Kayla, thanks for the link, very helpful

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/12/2013 7:48 PM (GMT -7)   
Kayla, sorry it has taken so long to get back to you, I have been really sick for awhile now & am just starting to come back around to having some energy. This is usually when I can post & I am getting tired of my bed & couch, LOL. I have never been tested for Lyme but I had never felt the need to check. I have read alot about it but just don't feel it fits me. I am going to talk to my Dr about it & also check into adrenal fatigue. I would like to be tested for both now. I would love to find something that I can maybe do something about, not much but feel like I can have some control. Right now I feel like my life is out of control, the only thing I can control is how I handle each day. Hope you are feeling good today, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

allas
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/13/2013 12:22 PM (GMT -7)   
Jewerlylady,
     Your comment about finding a cause for your symptoms struck me.  I wanted to offer you a possibility:  hyperparathyroidism (HPT).  You are the right age and gender for this disorder.  It strikes about 2-3% of the population each year. 
      Everyone know that they have a thyroid gland, but we all also have 4 parathyroid glands.  They are responsible for maintaining the level of calcium in the body.  In HPT, there is too much calcium.  The most typical symptoms are:  insomnia (including not feeling rested when you wake up), constipation, nausea, heartburn, excessive urination, memory problems, unrelenting fatigue, confusion, bone loss, and bone or joint pain. 
     Two blood tests are normally used to confirm the diagnosis:  calcium and parathyroid hormone (PT).  What most general practioners learn is that both have to be out the normal range for a diagnosis of HPT.  Unfortunately that is not true.  Endocrinologists that deal mainly with diabetic and thyroid patients might also be in the dark about this as well.  Calcium can be normal and PT high.  Google normocalcemic hyperparathroidism and you'll see what kind of research has been done on this subject.  You can also have high calcium and normal PT, but that is not as common.
      If you want to get an idea if you might have this, then vary your intake of calcium and vitamin D.  If you feel worse with an increased intake and better with a reduced intake, then it is certainly possible that you have HPT.
The treatment is surgery. 
      Hope this might help you feel better.  Let me know if I can answer any questions.   
 

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 8/14/2013 12:30 AM (GMT -7)   
hmmmm this is interesting - never heard of parathyroid...I have too much calcium, it showed on my blood tests, they had to do a corrected one as it was over normal. I also get all of those symptoms.
Which specialist do you need to go and see for that? Im in UK...
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

allas
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/14/2013 5:33 AM (GMT -7)   
Good morning Wackers34
         The doctor you want to see is an Endocrinologist, particularly one that specializes in parathyroid disorders.  Your family doctor may be aware of one. 
         You should know that calcicum levels rise and fall during a day and that can cause doctors to think that there was a problem with the test or the lab.  Since you've already had one high calcium result, I would ask to have serum calcium, ionized calcium and parathyroid hormone levels tested all at the same time.  If any one of these comes back out of range, ask to have a 24hr urine test for calcium.  This will often confirm cases that might be considered borderline. 
         Who wants to be sick when there is possible treatment.  If you need anything else let me know.  Best of luck.     

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/4/2013 4:52 PM (GMT -7)   
ME is becoming the standard name pretty rapidly. CFS is a name that lacks credibility and is associated with laziness and depression. We all know that laziness and depression is not what caused this. in fact, many of us were highly motivated and happy people.

Distractedly
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 9/5/2013 8:13 AM (GMT -7)   
You are not lazy or depressed, but there is a way to relieve these symptoms. Check out the booklet, Everything is a Distraction by SCusick. It really helped me.
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