As I read so many posts on here, I see most people lump CFS and ME together and they are not the same disease. They should be referred to separately as many of the symtoms of ME are not the symtoms of CFS. You can't die from CFS but ME can be a debilatating disease that can get progressively worse and CAN lead to death. So whichever one you are suffering from, what helps you feel better with CFS most likely will not help you feel better with ME. I am definitely on the upswing with my CFS. I walked almost 2 miles this morning and am feeling better every day. I think I am on the road to a total remission again. ME patients really have to monitor their activity levels so as not to cause themselves to go backwards and aggravate their condition. Don't lump these conditions together because they are totally different. Think of them separately and they need to be treated separately. Look up the differences on the internet.....a vast supply of knowledge. Have a good week-end everyone!
I have just seen a CFS specialist at John Radcliffe hospital, who used CFS all the time and didnt mention reference to ME...How do you know though which you have? I have the debilitating fatigue, but also sore throat / glands up...heart problems, endocrine probs, vision probs, twitches, tremors...all of it! Does this mean I will die? My GP said they were the same and other specialists I have seen said they were the same...What are we supposed to do if the specialists can't even get it right...
Even on the NHS website http://www.nhs.uk/conditions/chronic-fatigue-syndrome/pages/introduction.aspx they have said they are the same!!
Hi ChloeCybil
I agree with you entirely they are totally different!
I have severe ME and have never had a day free of symptoms in 12years
and the list is very long and never had a period of remission ever!
Thankyou for taking the time to explain the differences.
I do hope you are on the road to a full remission that would be fantastic
for you!
Have an excellent and healthy weekend!
I'm apologizing in advance for what may be my controversial post. There is a lot of controversy about whether CFS and ME are the same disease. Here in the U.S., it's been apparently been decided that they're the same illness, thus the designation CFS/ME. Over the years here, the CFS community has been very angered by people almost making fun of the name "Chronic Fatigue Syndrome." It makes it sound like we're lying on a chaise eating bonbons. CFS was even called the "yuppie flu" here for many years. So in response to this minimizing of the severity of the illness, it was decided to combine the CFS with the ME used in so many other countries, which gives the illness the serious-sounding name it deserves.I checked out several websites, which mirrored the confusion. In one, for instance, it says:
"It should be explained that there are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that some 250,000 people in Britain are affected by this illness.
Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
Chronic Fatigue Syndrome or “CFS”
Post-Viral Fatigue Syndrome or “PVFS”
Chronic Fatigue Immune Dysfunction Syndrome or “CFIDS”
I hope I haven't offended anyone here by posting this, but I couldn't resist. I've had so many years of me telling people I have chronic fatigue syndrome, and people responding with, "Oh, I get tired, too.' That's very discouraging to hear.
I find this reay interesting and I have still to make up my mind on if they are different, I have read a lot of websites that are very anti them being lumped together but then at hospital the specialists say they are the same, and I think I am siding that way.
But there are different severities of me/cfs, with sever me/cfs being the most debilitating and most resistant to management strategies.
Hi Jackie
Your post is in no way offensive, infact it is very informative!
The more information and understanding of how this condition manifests itself or how it is perceived by professionals, patients, carers, the better
in my opinion!
My NHS GP here in the UK refers and writes Chronic Fatigue Syndrome
and makes no mention of ME anymore, even though that was the diagnosis I was given in 2006.
My private Specialist uses the term CFS/ME,
Unfortunately any of the different names given to this illness of uncertain cause do bring with them a sort of stigma akin to tiredness!
In fact I no longer tell people I have ME because it is exhausting and frustrating trying to explain to healthy and fit person the limitations of this awful condition.
The problem is that there is very little funding being given to bio research into CFS/ME and here in lies the problem....No research no answers!
I understand only too well of trying to explain that the fatigue you feel with CFS is not even close to the same feeling of just being tired. I try to explain it, to those who want to understand, that the fatigue is like a bone crushing fatigue that no amount of sleep can make you feel rested.
'CFS' and ME comparison chart - The Hummingbirds' Foundation for ...
www.hfme.org/comparisonchart.htm
This chart illustrates the many differences between Chronic Fatigue Syndrome ( CFS) and Myalgic Encephalomyelitis (M.E.). As this chart shows, CFS and M.E. ...
Check out this website and it totally spells out for you the differences between CFS and ME
Sunshine:
You hit the nail on the head regarding lack of research. I was hoping there was more in the U.K. One reason for the name change here is that it was found that "Chronic Fatigue Syndrome" did not generate research because researchers did not take it seriously. In fact, in one of our government agencies, maybe the National Institutes of Health, money that was earmarked for CFS research was diverted to another illness. There was a huge scandal, and the money was finally returned. So what may sound like trivial arguing over something (name of an illness) actually has huge consequences. I recently contributed money into a crowd-sourced study of CFS/ME and the gut bacteria that may contribute to it. I almost think there has to be this kind of grassroots support for research by the CFS/ME community. Because it's very disheartening to see how little research has been done by the government and others in the past. I think of how the gay community came together and was so effective in finding drugs to deal with AIDS.
I've used exactly those words sometimes: "bone-crushing fatigue." It's very hard for others to imagine, just as I never could have imagined this until I got it.
Your s right, its frustrating when the professionals get this wrong, its so horrible to be treated like your a lazy person that needs exersise or hasnt got the common sense to know yourt fatigue is caused by lack of exersise, diet and burn out from living to exess, When I was diagnosed by a gp they called it cfs and they were so vague, its so damaging to get the wrong treatment.
Hi Jackie
This is very interesting and the points you are making are spot on!
I have had almost the exact discussion with various people about research, naming the illness and relating the situation to the Aids problem. Also how many years ago Multiple Sclerosis was referred to as "Hysteria"!
M.E. was also referred to many years ago as "Atypical Polio" because it
had all the symptoms but not the paralysis associated with Polio!
There is very little funding for bio medical research in the UK but millions
has been ploughed into CBT and self management of the condition because some health professionals were able to convince the NHS that this illness has a psychiatric basis and that has put a stop to virtually all biomedical research in the UK.
there are major constraints and limitations on how NHS GP's are allowed to treat patients...antidepressants and painkillers!
I cannot see this changing anytime soon and seriously ill patients are left isolated and ignored!
I was diagnosed with M.E. Had it for 32 years and the last 2 have been terrible.
I am always exhausted all the time and am finding coping with it very difficult at the moment especially with peoples attitudes.
Alison
Hi Chloe, couldn't agree more. Also you have people in the 'post viral fatigue syndrome' bracket too which apparently is the same as ME/CFS. It's been the most confusing aspect of thsi for me trying to tell myself do i have CFS/ME. Apparently from what i have read PVF is said to be a benign form of the disease whereas as you say ME is not.
When people say 'I get tired to' it is so so anoying and frustrating. It makes me so angry. If we all had a broken legs they would understad, so why can't they understand our desparate condition. Is the only way out unthinkable.
Alison
David: Check out my earlier post at the top of this thread. PVF is just another name for CFS/ME, according to many. There seems to be confusion in the professional community about this. But, frankly, I have no confusion about this. I was diagnosed with PVF years ago, and later, that diagnosis morphed into CFS/ME. But after all my research and many years of reading posts on various forums, I'm convinced they're the same thing, and that these so-called professionals are poorly informed. I reached my conclusion when reading the symptoms people describe that they have for CFS, ME,PVF, etc. The symptoms are exactly the same, again and again. Of course, not everyone has the exact same symptoms, but it's the same theme and variations over and over.
Wow! This is very disheartening to hear. I had always assumed that the U.K. was in the forefront of CFS/ME research. Whenever I read negative press about our illness here in the U.S., I would think, "Well, at least they're getting it right in the U.K." It's unbelievable to me that, given that this is an illness that is worldwide, so little has been done, and there is so much misinformation. As for CBT, well, sure that can help as a coping mechanism, just as it would with any illness, including cancer. But it's not any more of a basic treatment than it would be for any other illness. What if, when a person got cancer, they were told to just see a therapist for CBT, and learn to deal with it. No radiation. No chemo. Again, I think, more and more, that we in the community have to do something to get the word out, because the so-called professionals are doing zip! Of course, the difficulty is that we in the community have so little energy to do anything.
I couldn't agree with you more. To my knowledge, I haven't even been given a formal diagnosis of cfs, nor have I been assessed for ME. Yet I just received a follow-up letter from my doctor telling me to exercise with increasing frequency and intensity. I already walk when I have the energy. My doc. didn't even seem to know about ME and since overexertion can exacerbate ME, it troubles me that she would make such a recommendation without confirming either diagnosis! And yes, I too feel like I'm being treated like just a lazy, ignorant person who doesn't know the benefits of exercise. If only the doctors and researchers could experience the extreme fatigue and malaise that we experience every day, for just an hour, or even a minute, maybe we wouldn't be so summarily dismissed.
When I was first diagnosed with CFS years ago, my specialist had me working out on a treadmill! Looking back, I can't believe this.
Hi Serenity
This is really shocking to hear!
I would seriously think about changing your doctor and find one who is far more understanding. I have been verbally abused by to male GP's when
it was suggested early on by a mental health professional who had a lot of experience with cfids, cfs, me patients(I asked to see a psychaitrist cos I thought I was going crazy!!). Her diagnosis was based on a long and detailed history taken from me over two separate sessions. as that is
how they come to the diagnosis through history of your symptoms.
So the history that I put together which was some 6 pages long I took to a new doctor. I went to reception and asked who was the best most understanding doctor in the practice and made an appointment with her!!
That process took 4years...to cut a very long story short!!
I did still seek private treatment aswell because the NHS put strict constraints on what GP's can do to treat CFS/ME.