Private Members Debate: Myalgic encephalomyelitis - Ian Swales

[Bob]

What are these "subtle differences" that separate ME from CFS? I know that some like to establish that ME is entirely different from CFS but what makes it so when they symptoms are the same syndrome found in both descriptions. This goes on to muddy waters more for the future of understanding and the treatments of all sufferers.

Hi Sleepy,

The ME/CFS umbrella term is a catch-all diagnostic criteria. It doesn't diagnose a single specific disease, but it just gives a mish-mash of fatiguing illnesses simply by ruling out other diseases. After a doctor has ruled out other fatiguing diseases, then you're left with a syndrome, CFS, which isn't a specific disease, but an umbrella term.

What many people want is a way to diagnose a specific neuroimmune disease, known as ME. One way of doing this is to insist that 'post exertional malaise', for example, is one of the symptoms, because it is almost unique to ME, whereas other fatiguing illnesses don't have this feature. The fukuda definition does not require 'post exertional malaise' as a symptom for a diagnosis. The Canadian definition does require it. There are also other symptoms which could be used to give an ME diagnosis, which are specific to ME, and there are also now biomarkers which could be used to distinguish ME from other fatiguing illnesses.

The reason I think it is so important to separate ME from other fatiguing illnesses is so that research and treatment can then be meaningful. I think it would also help to remove the stigma surrounding ME.

Hope that's helpful, and makes sense.

Bob

 

[sleepy237]

Thanks Bob I think from the "specialist" input I received I was told that only 3% of sufferers have TRUE M.E. This included showing me a pie chart of CFS PVFS AND ME. And a suggestion I dont have ME also, which angers me as I do have PEM,many neurological, autonomic,cardiac imbalances you know how it goes. So if I dont have ME then P.E.M must be a symptom of CFS, is why I was angered at what the "subtle differences" were left thinking well they must be very subtle indeed. I really don't know who can unravel this riddle. But hope that they (the powers that be) will come up with something. Thanks

 

[Bob]

Thanks Bob I think from the "specialist" input I received I was told that only 3% of sufferers have TRUE M.E. This included showing me a pie chart of CFS PVFS AND ME. And a suggestion I dont have ME also, which angers me as I do have PEM,many neurological, autonomic,cardiac imbalances you know how it goes. So if I dont have ME then P.E.M must be a symptom of CFS, is why I was angered at what the "subtle differences" were left thinking well they must be very subtle indeed. I really don't know who can unravel this riddle. But hope that they (the powers that be) will come up with something. Thanks

Hi sleepy,

I'm not sure where your 'specialist' might have got that information from ("3% of sufferers have true ME"), because as far as I'm aware there is no data that separates ME, as defined by the WHO, from other fatiguing illnesses in the UK. Sometimes 'specialists' don't know so much, and it can be helpful to seek a second opinion, or even to make up your own mind about this illness. Many doctors have a prejudice against 'ME' and won't give that as a diagnosis, but they just choose the semantics that suit them (i.e. CFS). Doctors are not trained to separate ME from CFS, so they can't actually diagnose you with one or the other, they can only give an ME/CFS diagnosis.

I would say to anyone who has a 'CFS' diagnosis, not to be fearful about proposals to use tighter criteria to diagnose ME. At the moment, in terms of the health services, 'CFS' and 'ME' are just semantics, and mean the same thing, because the health services don't separate the two, so they can't diagnose one or the other. You just get a CFS/ME diagnosis. Classic ME has specific symptoms, and it's in everyone's interests for us all to know exactly what illness we have, and we would all need to be re-assessed if they changed the diagnostic criteria. At the moment an 'ME' or a 'CFS' diagnosis are meaningless, and that's the problem.

Sleepy, as they don't diagnose ME in the UK, but only ME/CFS, then maybe it might be best for you to work out for yourself whether you've got what the WHO calls 'ME'.
One way to do this is by looking at the Canadian criteria, but admittedly, this might not catch everyone who has ME, especially if only a snapshot of a patient's symptoms are looked at.
Mikovits, Whittemore, Jason and Klimas had a very helpful round-table discussion where they said that patients' symptoms need to be looked at over the entire course of the illness, and not just a snapshot of symptoms, because they've seen so many of their patients' symptoms change over time.

Even keeping in mind that diagnosing ME as a distinct disease might not be a perfect solution for everybody, I believe that if it is done in a very considered and careful way, then it would be a very helpful step forwards for our whole community, and way way better than the current arrangements. There are sensitive ways it could be done where people like yourself are not then neglected. Although, looking at your symptoms, to me it looks like you have the symptoms of ME! We would all have to be re-evaluated anyway, so a previous diagnosis of CFS would be meaningless.
If you look at the work that Jason does with diagnostic criteria, I think it is very interesting and extremely enlightening work.

That's my thoughts on the subject anyway, but I acknowledge that it's an extremely complex area, and I totally understand people's fears.
It's just that I think the current arrangement will never lead us anyway, and something needs to change.

Bob