What is the difference between CFS and ME?

I see the labelling of the dis-ease as different grades if you will. ME being the worst, most debilitating. They are all horrible though, CFS has different levels to it aswell, PVFS i see as being the most benign. I think if we are to get well we have to create a recovery plan specific to YOU, how did you get into this ? I know for me it was chronic long term stress with a virus that pushed me over the edge, even in the beginning i had a chance but did not listen to my body, i became unwell in Nov2013 and did not fully rest till Jan, even then i was trying to run 10k 2-3 times/week when i should have known better. Being an athlete this was a shock to me to accept, but about 6 months into this i am finally accpeting the problem so i can bring about the solution. But this is not a nice place to be and i find coming here talking to other people extremely theraputic. Afterall the GP's have abandoned me, there is no treatment, i could not get psychotherpay to help, i could not get physio, i am on my own with this. Even the local ME support group meets only once per month. We have to be pro-active in our own recoveries. The human body has a remarkable ability to heal when it is nourished properly. In our case pacing and rest is crucial. I know if i push too much one day like i did yesterday i truly suffer badly the nexdt which does lead me to believe most CFS/PVFS is caused by mitochondrial dysfunction as stated by Dr.Myhill. So if it is it would not be a hard thing to re-correct, which i plan on doing.

The two are exactly the same. Some people like to think they are different, for example because they have more of cognitive symtoms than other types of symptoms, but still those two are the same. Also PVF, when it lasts over 6 months, cannot be differentiated from the two. 

The unfortunate thing is that none of these names is very good. CFS is said to trivialize this disease, like it does; ME is cryptic and may even be inappropriate (this is not just about the brain); the disease often starts as PVF, but fatigue is not the only problem, as we know.

 

From what i know it was originally named M.E... back in the 80s when it was first really recognised.. the CFS and PVCFS are just the new up to date names for it.. Doctors these days dont use the ME tag anymore and you get diagnosed with CFS .. its all the same condition.. Its about time they made a better protocol for the condition as this would make it easier for people diagnosed with it.

From everything I've read, they're the same. In the UK, it's called ME; in the U.S., CFS. By the way, if you heard of someone having myalgic encephalomyelitis (ME), how seriously would you take it? What about if you hear someone had chronic fatigue syndrome (CFS)? *In one study I read, peope took ME a lot more seriously, for obvious reasons. That's why a lot of us are very annoyed at the name CFS. Sounds like we're lounging on a couch eating bonbons. Accordingly, it's harder to get research done on an illness, CFS, that doesn't sound so bad. In fact, at the Centers for Disease Control (CDC) in the U.S., there was a scandal several years ago, where money earmarked for CFS was diverted to another cause, because CFS wasn't taken seriously.

This site aimed at getting proper recognition for ME says that CFS is a misdiaognosis if you have ME (although that's not to say that CFS is not serious). - http://www.hfme.org/comparisonchart.htm

It is important to have a clear understanding of the causes because if you don't know the cause it's difficult to know what the appropriate treatment should be. 

Obviously whoever created that site had good intentions, but basically they are saying everyone else calling the disease ME/CFS is wrong, and they are right.

I don't LIKE the name of this illness and neither do others, but trying to distinguish between ME and CFS is a vain endeavor. In fact they are trying to paraller chronic fatigue syndrome with chronic fatigue, which is very misleading, because chronic fatigue is a symptom of many diseases and clearly different from the specific diagnosis of ME/CFS.

Clearly better diagnostic methods are needed to help diagnose ME/CFS and get proper treatment. Yet even without a brain scan it's clear I have inflammation in the brain - and muscles.

Hi Avocado

I've only just started looking into this today because its Invisible Illness Awareness week and one of my friends shared her 30 points about life with ME. 

I've been discussing it with her today and she was saying that the distinction between ME and CFS is quite a big issue and that the ME/CFS diagnosis is a comprise between 2 schools of thought that have very different views on the causes of the symptoms that often receive this dignosis. 

She was explaining to me that ME was first described by Dr Ramsey in the 1950s as being an organic illness involving inflamation of the brain and spial cord. However, in the 1970s a group of psychiatrists, headed by Dr Simon Wessely, put forward an alternative view that the the condition behavioural arising from a psychological need to be ill leading people to behave ill when they're not, which then leads to genuine symptoms of muscle pain due to their inactivity. This view wasn't based on observation or treatment of patients, or on research but simply on the fact that no concrete physiological cause could be observed by our current modern medicine. It was this group that came up with the name 'chronic fatigue syndrome' and their view has become extremely influential, if not the dominant view in the NHS becuase Dr Wessely was the government advisor on CFS and his views have become the foundation of governmental and NHS policy. 

My friend explaied how people with ME can be very badly treated by those who accept Dr Wessely's view that the cause is ultimately psychological because they can be sectioned and forced to do activities that their body can't bear seriously worsening the condition. 

I'm fairly new to all this, but if what my friend and the Hummigbird Foundation are saying is correct this is extremely serious and more research needs to be done into the causes. 

None of this is to say that peope who suffer chronic fatigue without having ME "proper" (i.e. inflamation of the brain and spine) deserve any less help and treatment than those who do have ME proper. But it just seems to me that it is a fairly basic principle that for each person who is suffering chronic fatigue one needs to know what the cause is before it can be properly treated as those whose causes are psychological will need psychological treatments and those whose causes are organic will need medical treatment. 

Kevin, Jacquie, I fully agree that Wellesy's views are/were outrageous, though elsewhere I remember him defending CFS as a real illness, at least against those who thought there was nothing wrong with us at all (except the head...) In fact the reason how I first started following discussions here was that I though this web site lived in the past and I suggested they change the discription of available treatments etc., instead of promoting CBT and all that crap. (We intuitively know it's crap, because for the majority of us this disease started from a viral infection, hospital operation, or similar clear-cut event.)

But I've also been following a number of other sites with a no-nonsense, research-based approach, for example the US-based "Solve ME/CFS initiative", and if they are ok with the term ME/CFS, I'm ready to accept it too. One problem with ME is that it means absolutely nothing to outsiders. And, if they claim that ME is easily diagnosable, that is simply not true. How many of us have had a brain scan? You see, this is the reason why I said even without a brain scan I know I am suffering from ME/CFS, or a group of symptoms belonging here, if you like. Those who have a "proven" ME are lucky, but still it does not mean that the source of the disease is known, i.e. which virus caused it - that's why there's still so much work to do for the researches! So this problem applies regardless of whether you talk about ME or CFS. Unlike they claim on the Hummingbird site, I don't believe there are lots of misdiagnosed CFS sufferers. From the multitude of discussions I have been following, I think this diagnosis is usually the last one people end up with after going a long way and looking into illnesses for which there is proper treatment available. 

Incidentally. A 50-year long study was conducted in Britain, apparently to prove the hypothesis that CFS patients had this strange reluctance to move their asses. Surprise surprise, the outcome of the study was that CFS-patients in all stages of their lives HAD BEEN PHYSICALLY MORE ACTIVE than people on average, (until they fell ill). Well did this make the researcers change their mind about GET, which was based on this singular assumption about exercise-reluctance to begin with? Of course not. They simply could not imagine that they had been so wrong from the start. And there is evidence that GET works, right? (Because apparently some people were cured in spite of doing GET....)