POLL OPEN! Terminology, Definitions, and Criteria

[Dr.Patient]

Did these discussions happen before the ICC criteria came out? If so, we have an opportunity now to rediscuss in light of the new criteria.

 

[Sushi]

Did these discussions happen before the ICC criteria came out? If so, we have an opportunity now to rediscuss in light of the new criteria.

Both before and after. This campaign/discussion/advocacy issue has been going on for many years and is still very active.

Sushi

 

[taniaaust1]

Debilitating ------ syndrome? Let's all chime in for terms, thanks!

I'd hate to have this illness renamed after a symptom. When it gets renamed (if ME doesnt stay) I do have it will get a proper name .. Asthma isnt called "cant breath disease".

 

[taniaaust1]

PS: I was trying to start this thread for more than a week, before I had a 'good' day when I could do it. So, everyone, please wait for a 'good' day to do this poll, thanks!

Unfortunately my brain issues with this illness never let up. I was trying to do it on a very good day, my brain only gets worst then that. Many of us have ongoing symptoms with this illness too and memory and concentration and working memory issues is usually one of the ongoing symptoms of this disease. If all your symptoms let up at times, you are very fortunate.

 

[taniaaust1]

I think we all should be ready with a powerful term in case the IOM decides that ME is inaccurate, and assigns it another 'benign' name.

This has been a deeply often discussed subject, it probably comes up every couple of years in which its deeply discussed and there is already some favoured names among the community.

eg Ramsey Disease is one which usually comes up in such convos along with another (I cant think what is is now but it expresses the neuroimmune etc aspects). I suggest you to seek out the past long discussions this ME/CFS community has had on this subject (most thou are in favour for ME till more is known about our disease).

 

[Dr.Patient]

I am becoming more aware, though painfully, that cognitive problems are just as bad as no energy for many people.

 

[taniaaust1]

I believe it also helps to piggyback onto an established, serious illness that people are familiar with.

Well the ME full term hasnt at all helped so I personally dont believe it will do much at all while the push out there continues on towards the psych stuff and the E term from ME, that reminds people of brain swelling as it sounds like encephalitis.

 

[taniaaust1]

Yes, things we need to focus on - every exertion causes exhaustion. What is different with us is, this exhaustion is prolonged. Some people have an immediate onset and some a delayed onset of this exhaustion, so we cannot use this. But other illnesses recover after exhaustion, not us. We have a delayed recovery. So we need terms that indicate these.

Then the severity of this- maybe terms like debilitating or incapacitating.

Then the word syndrome, since our illness involves multiple systems.

Please chime in with your thoughts, thanks!

Even the thoughts that all ME people are currently suffering from prolonged exhaustion can be wrong. I'll use my case for example.

I currently cant go into a prolonged exhaustion state as I cant even exercise enough to do so, the POTS (from the ME) stops me from being able to exercise (I can only be on my feet for a very short time due to it).. hence when Im crashing now, Im crashing from the POTS which the POTS is fixed with IVs (but unfortunately that doesnt last long at all as 2 days later, Im back to my ME low blood volume again and the POTS (I also dont do more after an IV as it would be bad pacing to suddenly be doing more just cause Im feeling better some for 24hrs (note I still have my other ME symptoms eg my food issues, IBS-C etc etc) as one of my ME symptoms is being treated for a short time.

If my POTS was controlled well then I would be getting the prolonged exhaustion more cause I'd be able to do more to overdo it ME wise . So irronically if someone asked me currently if I had prolonged exhaustion, I'd have to say no not at all usually even thou I do have ME.

ME causes all kinds of symptoms and for some of us its given coexisting conditions eg POTS which may be overrunning that "fatigue/exhaustion" symptom. As I said in a previous post.. fatigue and exhaustion are down on my ME symptoms list as my other symptoms are so very bad.

Anyway, there is too much empasis put onto that ONE symptom over all the rest. When there are cases of ME with severe POTS which put the people in my situation were they cant exercise due to POTS so dont usually ME flare in the ME fatigue manner. (I currently have some kind of virus reaction going on in my chest to do with the ME but that isnt giving me fatigue).

 

[Dr.Patient]

What are we trying to do in coming up with a name?
-1. how serious it is?
-2. how accurate it is?
-3. how 'scientifically sounding' it is?
-4. Does it encompass everybody with the illness?
-5. Are we trying to sound 'legitimate' for the doctor?
-6. Are we trying to sound 'legitimate' to the general public so they will understand the true nature of our illness?

I think if we begin to understand these things, the naming will be done properly.

As far as I believe, the term ME satisfies only #3 above, and perhaps a little of #1.

 

[Dr.Patient]

Even the thoughts that all ME people are currently suffering from prolonged exhaustion can be wrong. I'll use my case for example.

I currently cant go into a prolonged exhaustion state as I cant even exercise enough to do so, the POTS (from the ME) stops me from being able to exercise (I can only be on my feet for a very short time due to it).. hence when Im crashing now, Im crashing from the POTS which the POTS is fixed with IVs (but unfortunately that doesnt last long at all as 2 days later, Im back to my ME low blood volume again and the POTS (I also dont do more after an IV as it would be bad pacing to suddenly be doing more just cause Im feeling better some for 24hrs (note I still have my other ME symptoms eg my food issues, IBS-C etc etc) as one of my ME symptoms is being treated for a short time.

If my POTS was controlled well then I would be getting the prolonged exhaustion more cause I'd be able to do more to overdo it ME wise . So irronically if someone asked me currently if I had prolonged exhaustion, I'd have to say no not at all usually even thou I do have ME.

ME causes all kinds of symptoms and for some of us its given coexisting conditions eg POTS which may be overrunning that "fatigue/exhaustion" symptom. As I said in a previous post.. fatigue and exhaustion are down on my ME symptoms list as my other symptoms are so very bad.

(I

Everybody is trying to put forward their differences, so what thing is common that all of us have?

 

[SOC]

Everybody is trying to put forward their differences, so what thing is common that all of us have?

Immune dysfunction?

 

[Dr.Patient]

Even the thoughts that all ME people are currently suffering from prolonged exhaustion can be wrong. I'll use my case for example.

I currently cant go into a prolonged exhaustion state as I cant even exercise enough to do so, the POTS (from the ME) stops me from being able to exercise (I can only be on my feet for a very short time due to it).. hence when Im crashing now, Im crashing from the POTS which the POTS is fixed with IVs (but unfortunately that doesnt last long at all as 2 days later, Im back to my ME low blood volume again and the POTS (I also dont do more after an IV as it would be bad pacing to suddenly be doing more just cause Im feeling better some for 24hrs (note I still have my other ME symptoms eg my food issues, IBS-C etc etc) as one of my ME symptoms is being treated for a short time.

If my POTS was controlled well then I would be getting the prolonged exhaustion more cause I'd be able to do more to overdo it ME wise . So irronically if someone asked me currently if I had prolonged exhaustion, I'd have to say no not at all usually even thou I do have ME.

ME causes all kinds of symptoms and for some of us its given coexisting conditions eg POTS which may be overrunning that "fatigue/exhaustion" symptom. As I said in a previous post.. fatigue and exhaustion are down on my ME symptoms list as my other symptoms are so very bad.

Anyway, there is too much empasis put onto that ONE symptom over all the rest. When there are cases of ME with severe POTS which put the people in my situation were they cant exercise due to POTS so dont usually ME flare in the ME fatigue manner. (I currently have some kind of virus reaction going on in my chest to do with the ME but that isnt giving me fatigue).

When ICC criteria say 'exertion', they do mean even simple activities of daily living can cause this prolonged exhaustion. Not 'exercise' the way it's used by the public.

 

[taniaaust1]

I am becoming more aware, though painfully, that cognitive problems are just as bad as no energy for many people.

The cognitive issues are shocking for many of us. Back when I was till working a wee bit, I couldnt go to my work where I'd worked for years for 3 days as I suddenly forgot where it was and was too embarrassed to ring my boss.

I even one time forgot my own address to where id lived for over 10 years and hence couldnt even get myself home. One morning back when I was still able to eat like a normal person, I forgot how to cook toast, didnt remember there was "toasters' so couldnt have toast that morning.

The ME when I was still able to crash into it (I need to be able to do 1.5-2hrs of activity per day to crash with it), one time during a ME crash I didnt even known my sisters husband when he came to my front door.

I gave up driving as I was driving as people were seeing me driving throu stop signs as my brain wasnt registering that I was supposed to "STOP" at a stop sign. I saw it on at least one of those occassions as it put me into confusion and I couldnt work out what it meant, couldnt work out I was supposed to STOP THE CAR to give way (my mind 'STOP', stop what??) so i just kept on driving in confusion. I couldnt put the info together from what I was reading, couldnt carry it over to the action I was supposed to do.

Im at huge risk if I leave my house without a support worker due to how my brain can just fault with this illness (Ive dazed out with my brain forgetting I was crossing a road on several occcassions and two of those times I had cars heading towards me and my worker had to drag me off the road).

My ME brain dysfunction is something which far outrates "fatigue" or "exhaustion" for me.

 

[alex3619]

Not many would argue that ME is a perfect name. It is however many times better than CFS. The point at the moment is we have no proper understanding of a cause or causes (in subgroups, or multiple causes for the same subgroup). The disease will name itself once we know.

For example, if the microglial hypothesis becomes highly validated, then we might find we have Diffuse Microglial Priming Disorder, DMPD, with tests to go with it.

 

[Mij]

I am becoming more aware, though painfully, that cognitive problems are just as bad as no energy for many people.

My cognitive/brain deficiencies ARE caused from a lowered ATP production. It's all related. From my understanding is that the brain uses up the most energy of any organ!


ME is a disorder of the CNS, the central nervous system is made up of the brain and spinal cord. It affects all systems.

 

[Dr.Patient]

My cognitive/brain deficiencies ARE caused from a lowered ATP production. It's all related. From my understanding is that the brain uses up the most energy of any organ!

Absolutely agree! This is the message I was trying to get across- when there's no ATP, nothing nowhere can work properly. I believe if we could take ATP injections daily, like insulin for diabetics, we could lead a normal life like the diabetics!

 

[TigerLilea]

Everybody is trying to put forward their differences, so what thing is common that all of us have?

We are spectators watching the rest of the world getting on with their lives while our lives are on hold. That is what we have in common. The point that people are trying to make is that there isn't one main symptom in common. My CFS is 80% exhaustion/fatigue, for someone else it will be POTS, for another person it will be brainfog.

 

[Mij]

Absolutely agree! This is the message I was trying to get across- when there's no ATP, nothing nowhere can work properly. I believe if we could take ATP injections daily, like insulin for diabetics, we could lead a normal life like the diabetics!

ohhhhhhh if it were that simple! It would be like putting more gas in the car but the piston is broken and there's no air in the tires.

 

[Sushi]

ohhhhhhh if it were that simple! It would be like putting more gas in the car but the piston is broken and there's no air in the tires.

Exactly! Similar to injecting glutathione when you still have a methylation block.

Sushi

 

[Dr.Patient]

I've read somewhere that there is a possibility that IOM 'may' rename ME by spring 2015, is that true?