Discussion in 'General ME/CFS Discussion' started by nanonug, Mar 3, 2018.
This was the express intent of the criteria.
I realize there’s an old thread on this but, to be a little more current do PWCs here feel their malaise is the same as early on or has it progressed in one
or more areas. You read in other forums where people are intimating interest here and there about their future state, sic to be able to do this or that,
travel in particular, worry over seeing a long lost friend or relative due to potential of increased PEM, or concern about downright decay.
How and why/or not is an interesting concept.
I, for one, without hesitation would classify my condition as having progressed. I didn’t start off more or less sofa-bound. Then, we get into Progessive Systemic Atrophy, PSA, perhaps another modifier, ergo to PEM? (Get confused with all these acronyms and we’ll soon be getting drafted...into the NHL, or NFL...etc =&
My PEM has morphed a bunch of times, including delay of onset, duration, intensity, and additional symptoms. In the mid 90s PEM would take a few weeks to start recovery, by which time I would crash again. Right now my PEM lasts about three days, though I am shaky for days after that, with a delay of a few hours before it kicks in.
Uk might well be different to USA. I know ron Davis uses CFS quite often for his son. If my dad referred to my very severe ME as CFS here in the uk I'd hit him.
CFS here has been utterly tarnished by the wesselys school. GPs and the public think CFS >> tiredness >> long time thought to have no organic cause >> now showing some but behavioural intervention and rehabilitation or good old time should be the answer for most. We can't win by compromising ME as ME/CFS as it's always CFS or CFS/ME here with ME just a tag on Name for placating patients.
SEID is a fine upgrade for me until we know more but it has been widely shunned by patient groups here so Its little Used and in reality CFS still reigns. Obviously in time with research CFS could take on a different meaning and respect but I think it's currently a noose around our Necks and have not understood the resistance to SEID.
The medical profession have specific meaning for encephalitis , it's not given to any neuroinflammation.
Do you mean encephalomyelitis which is inflammation of the brain and spinal cord?
I'm still mystified by this debate between ME and CFS. I'm not convinced my brain and spinal cord are inflamed, though I fit the IOM ME/CFS to a T and was diagnosed by a top specialist, so calling it ME doesn't make sense to me. I do have chronic fatigue, though, and PEM, which everyone agrees is a cardinal symptom of this disease.
Practically in getting treatment, I've found it more useful to use any other ICD10 code, as there's no real treatment accessible for folks with R53.82 or G93.3.
In the end, I don't care what anyone calls it, I just want treatment help me improve.
‘Sorry your illness bounces around so much. That shakiness is troublesome for me as well. It can even be embarrassing eating
around other people. Sometimes I feel like I’ve got palsy.
I was a Lake Tahoe ‘victim’, at least it correlated to onset. Frankly, The real stuff started early 90’s, after a flu that cycled for ~5 years - of just feeling awful repeatedly w/o much PEM, per se. It stayed pretty steady for years, with remissions for long periods followed by crashes beginning on 2nd day and lasting a week. I could do light exercise, like easy cycling.
The next 10 years were more periodic downs with recovery to baseline, functioning range dropped to ~50% - 70%.
The last ~10 years have been progressive decline with short periods of remission with lots of rest, especially progressively worse after legal battle 10 years ago, functionality dropped to ~30%-60%. The last 3 years have been more steady down, with lots of sofa time, mostly homebound. I try walking daily - not far, just enough to keep the machine working. Avoid PEM like the plague.
Completly agreed, most significant (even if it used to appear on my own list only as 4th or 5th symptom).
I would think urgently: These should be recognized as attempts, if there would be any doctor who would be able to grasp such a thought. Trying to differentiate between "ME" and "CFS" leads to nonsense here when dealing with an example of that cloud for longer, I strongly guess...
In my experience/view too.
What´s about SCREW? Because this disease can screw you up from inside.
But sensible meanings for the characters would be needed as well.
(Of course it´s half a joke and wont probably have any bit of a chance.
But that strange abbreviation would provide other humans with some idea how it can be
and how severe it can be. For that idea I put it here.
It may implicate that jokes could reach far, up to things I don´t need to do anymore.)
At the recent Clinicuans' Summit in Salt Lake City, the doctors seemed to agree on the name ME/CFS.
I agree with Learner1. There are only a couple of times when I would have thought I had inflammation in my brain or spine. I have never had the extreme "on fire" pain like Jen Brea describes in Unrest. My pain seems to come more from hyperjointmobility and subluxation of my joints than anything else. For instance, my sister has Fibromyalgia and I don't think I've ever had her level of pain.
I've never been bothered by the term CFS because that is what I have --never ending fatigue that they have not found a reason for but I know that many feel that our disease is not taken seriously with that name. With SEID Systemic Exertion Intolerance Disease, I can just hear some late night comedian saying, "What? That just another way to say you're too lazy to exercise." I don't think it's going to make them take us anymore seriously than they do CFS.
Re: ME. I can see why some people like Cinders66 is bothered by us using CFS if like Fibromyalgia there are factors that make ME different than CFS. There are so many diseases in this same spectrum that I kind of get the feeling that ME has some similarities to CFS but also some differences--but that it isn't the same disease exactly. For that reason, I don't use ME to describe what I have.
Thanks for your vote of confidence.
At the recent Clinician's Summit, they all agreed on ME/CFS as a name, and as they see more of us than we do, that's good enough for me.
Its worth keeping in mind that ME is completely tarnished too. That started in about 1970. We need biomarkers, an understanding of the pathophysiology, then a new name. ME is just much better than CFS due to its political ramifications, especially on how the uninformed react to it. Its the definitions that matter the most though, so long as our researchers get those right then there will be progress. Currently the leading researchers are mostly using ME definitions even if they call them CFS or ME/CFS in general discussion.
This is mostly about research, not common usage. The different definitions have different cohorts of patients, different numbers and severity. What problems lurk in those groups is still up for definitive research to determine. The Oxford definition is so broad, for example, that its useless. The tighter the definition, the lower the number of patients selected, and the narrower the range of problems they have (in theory).
I prefer SEID over the others. Problem is some people are just hearing about CFS in the US. Have never heard of ME. And now we have to try to make them aware of a more applicable designation. Good luck with that.
And I love the psychobabblers. I have used that frequently myself. I feel their involvement has severely stagnated research, knowledge, and potential treatment of many diseases they want to lay claim to, which is almost everything. I have been forced to use Kaiser Permanente in my county in WA state. They still want to Rx psycho-therapy under the guise of cognitive functioning therapy.
PS - I feel malicious whenever people tell me I need exercise and movement. They think I have been laying around in bed for fun? So I tried to sit in the rocking chair. Before long all of my muscles began humming and gave out. I needed help to return to bed. neener neener
It needs to be understood that what is being argued about is not names. These are labels that have been applied to various, often incompatible, epidemiological case definitions. If one wants to ‘get on with the research’, one must first choose a case definition in order to have selection criteria to choose patients. What is unlikely to help is research done on patients meeting one criteria (ie CFS) being applied to patients meeting other criteria (ie ME).
SEID makes things even worse. It is designed as a clinical case definition. It has no application for research. This means there will never be any meaningful research results that can be applied to SEID. The IOM in effect manufactured an orphan disease in a hamfisted attempt to bring more attention to the plight of CFS patients.
Anyways, Frank Twisk has recently published a new paper on the topic that is worth checking out:
So when one meets the criteria for both - how are they labeled? It needs an all encompassing description, two or combination thereof. Will they come up with a medical code for both??? Systemic is all encompassing.
Perhaps that's why the clinicians were agreeing on ME/CFS?
Right now R53.82 is chronic fatigue and G93.3 is ME.
I don't like any of the definitions listed. SEID seems wrong to me, because my baseline symptoms exist even without exertion. PEM just amplifies some of the symptoms. Are the baseline symptoms due to intolerance of the exertion of basic living (pumping blood and air, etc)?
I agree with maple: there's really no point in arguing about the name of the disease at this point. Wait a bit longer until we have an actual diagnostic test and understanding of whether it's neurological, metabolic, or whatever.
What we don't want is Somatoform/CFS/ME/SEID/TATT/KitchenSink/PartridgeAndAPearTree
For research the CCC and ICC are the standards accepted by most experts. The CCC probably is in the lead I think but that will change, its only because more are familiar with it.
For clinical definitions I predict we will face a mishmash until we have a diagnostic test or tests. What you are labelled with depends on who you see. If you see a bipser babbler then watch out for somatoform or functional neurological disorder, MUS, MUPS, or one of the many variants. If you see someone aware of the biomedical research it will still depend on the country. Here its nearly all CFS. US is mostly ME/CFS. UK is mostly CFS, but patients have fought hard to get diagnosed with ME in some cases.
I prefer ME. When we have an understanding of the pathology and some tests I expect to see a new diagnostic category, based on the findings. SEID was an early attempt for that, but before enough research was done to say anything definitive.
The issue here is many doctors will not accept many of these labels for various reasons. Somehow many are fine with MUS or FND, which have no test and no definitive research, but have not even heard of ME and seem to not know that there are a great many known abnormalities using tests typically found in research hospitals, though with effort some can be obtained elsewhere. Currently I suspect that there are between 200-300 things wrong with most patients, but only cutting edge tests used in research will find most of them.
There seems to be so much confusion out there. I was first diagnosed with ME in 1994. Had been in remission and then denial that the symptoms were a relapse. In December, through my employer I saw am Occupational Health Doctor who told me "we don't call it ME anymore ... that's an old term ... we use CFS now". My own GP, back in the 90s never wrote ME on sick notes. As for me ... I don't know what to call it
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