Research: Diagnostic classification of ME, CFS and Chronic Fatigue

Hi Firestormm, yes it would indeed be cool to read the full paper. Excellent Cort! Is there going to be a blog on this, Cort? Bye, Alex

Thanks, Firestormm. Since the intent here is to distinguish accurately, I wish they'd refrained from using the term ME/CFS (which is defined by the CCC) in the final statement of the abstract. Fukuda defines CFS, so it would seem more accurate to say that Fukuda's criteria are adequate to make a distinction between CFS and CF. Then clearly those CFS patients without PEM should be excluded from ME.

Like you, I'm looking forward to reading the full paper!

Question: I know several people here that had PEM, now they are getting better (different approaches) and they have no PEM anymore. So what does this mean then??

There are various definitions of remission. Here are a couple of medical definitions taken from the internet:

Remission
A disappearance of a disease as a result of treatment. Complete remission means that all disease is gone. Partial remission means that the disease is significantly improved by treatment, but residual traces of the disease are still present.

remission /remission/ (re-mishun) diminution or abatement of the symptoms of a disease; the period during which such diminution occurs.

This exercise has very little value. A split between Fukuda and non-Fukuda will of course produce results that seem statistically significant, but these figures are meaningless since their is no CFS hypothesis.

The authors' definition of ME is yet another artefact and does not define actual ME.

Nods yeah.. you do see some people who were obviously probably ME rather then CFS loose PEM if they are lucky enough to go throu an almost full remission and on the way close to that.. the thing stands thou.. they still probably did have ME if they clearly did fit the ME stuff. (and many of those sometime in the future will go and crash back into it all).

I also have a hard time even being able to get into a PEM state (note..I did used to suffer from quite major PEM).. Nowdays the moment I get warm with activity or being on my feet.. the POTS (which the ME has given me) flares up too bad making me completely stop and go to bed. And that nowdays saves me from getting PEM. (i hardly get PEM anymore as the POTS overshadows everything else).

It is also that i can be affected so fast and strongly when I do even non standing things eg doing forms so trying to hold a pencil to write.. My hand can start to spasming out causing me to have to stop or it just goes into pain.... but its recovered in like an hr or so. I couldnt call symptoms like that PEM.. as thou it stops me fast.. it also recovers fast. The symptoms happen too severely and fast for me to do enough to get PEM much anymore.

It was different when I was affected by things more slowly and then ended up suffering the affects for far longer.

Some with ME could be missed if PEM is talked about and not PENE. The POTS some would say it was part of PENE flaring up when Im doing things. My hand shaking or pain after doing a little amount of writing and stopping me.. that too isnt PEM but rather more like PENE.

It isnt that my hand has got tired or my hand feels sick, my hand hasnt got "Malaise".. its purely often neurologically acting out due to the effort of writing and the spasming thou only usually will last an hour or so after I stop.. usually actually settles down a lot faster then that if I had managed to keep writing throu pain etc.

The hand thing is just an example of one thing which gets affected in me.. but in fact ANY part of my body I use can be affected.. just cant be described usually as PEM thou. PEM.. the Malaise part does not explain parts of body shaking with effort, tremors and symptoms like that (mainly ME stuff)... the excertion affects my body usually breaks out in having.. making me have to instantly stop an activity once my body starts having it.

I hope Cort thinks about it more and where someone like me then would fit if people with things.. who often cant do things enough to be able to cause their previous PEM states or who often breaks into other symptoms then Malaise which is part of the PEM.

I so wish the term PENE would be used to describe all the ways we can be affected by ME/CFS including the neuro issues.

*** note.. i said "some with ME may be missed" cause cort had lumped the ME and CFS together and he seemed to use PEM to try to separate the ME subgroup from the CFS subgroup.

Im just saying in my case based on that.. I'd then could end up in the CFS subgroup thou may case has been clearly one of severe ME (thou Im much improved then I used to be). My function levels are still quite poor (thou of cause not currently as bad as many.. I cant even do my own dishes cause i cant stand at a sink).

(my wrist kills right now.. I sprained it just from picking up a phone book this morning.. I picked up the book and had it in my hands but suddenly my wrist went weak and got bent right backwards with the weight of the book (no idea how that happened). I keep ending up injured from little things.... so are typing while trying to not move the wrist).

I just would like some kind of study on progression of disease and the effect that it has on symptoms. So we understand Subgroups Vs Progression.

The disease I have today does not reflect the one I started with, The symptoms are different and I have develop new stuff, the same is truth with most of the people I chat with, Also the symptoms reflect deficiencies, and The longer I am sick the more I learn to identify what is going on without the need of tests.
So by managing my disease, I can go from one subgroup to the other. I am a very analytical person, I have theories and I crash myself or cause myself symptoms on purpose just to verify my hypothesis, and learn what works and what doesn't.

Example:
Cramps muscle pain, twitches: For cramps I know I need to up magnesium, for twitches I am lacking on my potassium and I as soon as I supplement this symptoms go away.
If I wake up w HR in 90s I know I am on relapse, If I rest until it comes down to its 80s (days , weeeks or months) then I can feel pretty decent, If I push I experience diarrhea, extreme fatigue....

But the race is more than I can figure it out by myself, When I learn to control/manage the existing symptoms, I get new things to pop up and it is an endless battle. The longer I have been sick the crashes are longer and it is harder to get out of them, symptoms are more severe also and more complicated (like now I have POTs) and not as easily resolved by myself.

7

Just a quickie

Congrats Cort

Hope your contribution wasn't the proofreading!

Im feeling rude now cause I wasnt thinking.

Congratulations Cort on getting your paper published.

Such information will be produced by a panel study that I have currently running in The Netherlands.

ME not a syndrome

Unfortunately this article seems to be based on the underlying premise that ME is a fatigue syndrome. Actually it is a neurological disease and fatigue is not necessarily an element.

It seems fundamentally wrong to me, to place a neurological disease, with multisystem physical dysfunction on a continuum with a mental health condtion. On this basis anything could be on that continuum. Cancer and Heart Disease for example would be equally at home with CFS.

So CFS includes everything ....?

There is great danger , in scholarly writing, of validating the psychiatric argument and involvement; this article , although it calls rightly for a separation of CFS from ME, is also potentially a dangerous erosion of the boundary between physical disease and mental health, which is what the psychiatric lobby in particular , have been dreaming of.

Hi Greg
I did wonder if you had read the paper itself? When I read it it didn't seem to me to be describing ME as a fatigue syndrome, in fact it was arguing that ME was quite distinct from CFS. I don't quite see how the paper is "a dangerous erosion of the boundary between physical disease and mental health" either - can you elaborate? thanks

edit: from the Discussion:

They have to be 3 distinct conditions. Anyone with sever ME, or even just moderate infection onset ME Knows full well theres a difference between what they experiance, and what they read about with other cfs Patients. Its one reason that the whole topic has been so confusing. labeling 3 different conditions ( or possibly 3 different stages, or levels of the same illness ) into the same basket was bound to cause confusion, and it has for many years.

It appears to me this research is very needed, to at least find a way to seperate different levels or types of illness. The questions being asked here are good ones because it still seems rather confusing to me that possibly different conditions. ( types of illness ) may mimic the same illnesses being in remission. in other words there maybe a cfs caused by one condition. And a cfs in remission ( from ME ) caused by a intirely different reason. infection onset. = non infection onset as one example of what im trying to say.

It is possible that ME can progress to CFS through remission. Infact i belive that is what has happened to me. First being on my back for a lot of every week. slowly progressing to a point where excercise didnt produce symptoms as often. or quite as powerful. Either that or i never had ME. But you wouldnt have said that living with me for the first 5 years of it.

Congratulations Cort on trying to advance understanding of something that has held its secrets for far too long. Everytime we chip away at those secrets. More understanding of what these complex inconsistencies really amount too. Maybe we are getting closer to at least understanding some of these differencies, and what they could possibly mean