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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Mithriel,
This is essentially what I was trying to say, that someone upthread I think misunderstood. ME has been slandered. CFS in this country really does describe ME. I know that when I read the symptoms of the CCC or Byron Hyde's ME, that's what I have. Yes, it started with Mono. But yes, I was fairly functional at first, I just kept relapsing and relapsing and kept being told "Mono lingers" so I just figured I'd wake up one day and it would be gone, I had to live life in the meantime. I know that CFS is being widened by many to include the "just tired all the time," but that is not my case. Yes, I get exhaustion. Yes, in the beginning I got waves of it (at least then I could sleep). But I have so many more symptoms- cognitive, chronic nausea, violent headaches, 200 bright spots or punctate lesions in my brain. But in the US, to say you have ME, even to say full out Myalgic Encephalomyelitis, gets even doctors scratching their heads. They haven't a clue. CFS is a horrible name, I would have loved to use ME but it's pointless in the US, I prefer Neuroimmune something.
It's making me a bit ticked off that people seem to want to slide us with CFS in the US- the only diagnosis we are likely to get- into a separate disease. Yes, I've met people with CFS who I do not think have it. They have depression, they have something else. Their brains are intact whereas mine is like swiss cheese. But I've met many with CFS who definitely meet the CCC. Fine, re-diagnose us, but please use the correct testing measures, please have a name that doesn't imply that the sickest of the sick are lazy. And as for OI, in this country I've seen that described as a person with the worst outcome. I know it's been hell in my life, but treatment for it did not cure me. Nothing has cured me or come close. I have my better periods if I can sleep, but I'm still in a fog, my brain is still barely functional until after 1pm, and even then...
I guess what I mean is that CFS doesn't exist. Chronic Fatigue is part of many different diseases. Find out what they are. But ME does exist. However, in this country, you have to see like one of 3 doctors to get that diagnosis. My doctor is sure I'm quite ill and have XMRV, but he still calls it CFS. So separating them out in that way, without going through a further diagnostic workup, is just going to screw over those who have been diagnosed with CFS.
I'm not taking a swipe at you, btw. Someone else upthread I think misunderstood me, then there were several posts that said what I was trying to say (like Dr. Yes). I think you've got it right.
FUKUDA does not diagnose ME or anything close to it.The CCD does.The name change to myalgic encephalopathy should help when Us experts put it into practice
Irrespective of the case definition no one as far as I know would get a diagnosis of ME in the UK today. I was diagnosed as CFS between 1996 and 2000. I am Canadian Criteria. I have no idea whether or not my doctor used any criteria whatsoever. They merely 'ruled out' MS, cancer etc etc. It's a long time since I had MRI's and lumbar punctures (normal - ha ha bloody ha) and I don't know how much these methods have been refined since 2000, however, there are still no bio markers for 'our' condition. It remains a non - condition as far as the NHS is concerned. We need to get repeating this. And also that the only treatment offered is CBT/GET and in my case, I was once given homeopathy via NHS and told you'll notice you will start getting colds and flu again and that's a sign you are getting well'
LMAO
CFS (US) was a bodged term invented by the CDC when they were asked to investigate an epidemic that was most likely another ME epidemic. It was not a very good description of the original patient's disease.
It's making me a bit ticked off that people seem to want to slide us with CFS in the US- the only diagnosis we are likely to get- into a separate disease.
However, in this country, you have to see like one of 3 doctors to get that diagnosis.
We can't even get the Canadian criteria adopted in England...
http://www.meresearch.org.uk/research/projects/bioenergetics.htmlIs any research being carried out anywhere using CG, other than that undertaken by WPI and apparently, the ME Research UK co-funded Swedish XMRV study?
Suzy
Given these findings, the aim of this project is to study, in the in vitro setting, the function of an energy-generating enzyme which the researchers hypothesise might be under-functioning in ME/CFS. A range of in vitro studies will be undertaken, all based on primary assay and culture of muscle cells (myocytes) derived from ME/CFS patients (fulfilling the Canadian criteria for ME/CFS) and matched normal and chronic disease controls (following establishment of the techniques using existing myocyte cell lines).
...we can't even get our UK patient orgs to promote the adoption of the CG.
Is any research being carried out anywhere using CG, other than that undertaken by WPI and apparently, the ME Research UK co-funded Swedish XMRV study?
Yes, it's a very sorry state for our country to be in!
(Except, we have to start talking about England and Scotland separately now, because Scotland is adopting the Canadian guidelines.)
Yes, this proposal has been welcomed, it will be interesting to see how it pans out in practice.
In a previous posting in this thread, I provided links for and information on the current proposals for the forthcoming US version of ICD - the ICD-10-CM, scheduled for implementation in October 2013.
One of the links was for this historical CDC document from 2001, which I hadn't seen until recently, when it turned up by chance during one of my daily search engine fixes.
I've posted the content in full, below, with apologies if the content of this 2001 document has already been posted.
The majority of UK patients receive their diagnosis from medical professionals within the NHS. If CFS were to be placed in a different chapter of ICD, other than Chapter 6 to which it is currently indexed, my concern is that given the current lack of tests available within the NHS, that NHS GPs, NHS paediatric consultants and NHS consultants may "play safe" and plump for the "CFS" diagnosis and existing patients might find themselves being "downgraded" to "CFS" and that G93.3 (Benign) myalgic encephalomyelitis might become a "widow" diagnosis, that many NHS GPs and consultants will avoid.
So until the science is sorted, however much I dislike the term "CFS", I consider it could hurt UK patients if the current close association with G93.3 ME were no longer there.
Mithriel, I think what you are saying is that, for practical purposes at the present time, ME and CFS are the same? (Or, at least, the same illness gets given both names.)
From reading through this thread, it seems that most people in the USA get a CFS diagnosis because ME doesn't exist there; not in the minds of the doctors anyway... so we really confuse and upset people when we dismiss CFS as a lesser illness... or as a psychiatric illness.
People on this thread have been offended when it has been said that people with 'CFS' are 'just tired'... Many people don't understand what is meant by that because everyone in the USA is given a CFS diagnosis, no matter what their symptoms are...
I think most of us probably have a diagnosis of 'CFS' unless we are lucky enough to be Canadian... or in the UK we have a CFS/ME diagnosis.
I understand that not everyone diagnosed with ME/CFS has the same illness, and in my opinion, we should use a more specific diagnostic criteria for research purposes. And I understand that not everyone diagnosed with a fatiguing illness has a neuro-immune condition.
But those of us with a CFS diagnosis may have ME as defined by the Canadian criteria.
Bob
I agree with your concerns Suzy.
ME is probably the same as one of the illnesses covered by CFS.
I think the simplest solution is to consider "ME/CFS" as the illness we share. The psyches carry on with CFS but mean somatisation so we should never refer to ourselves as having it even if doctors insist.
ME/CFS is probably what is picked up by the canadian guidelines.