POLL OPEN! Terminology, Definitions, and Criteria

[alex3619]

@Dr.Patient I may be naive but I haven't felt any divisiveness here on the board. There are definitely people here of both lower and higher functional impairment than me and people with different viruses (EBV, Lyme, etc) different symptoms (cardiac/POTS/OI) vs pain/headaches vs everything under the sun but the common link is the inability to produce energy, PEM, and the complete loss of the life that we once knew. I think that puts us all in the same boat.

I would like to add to this point. Cognitively I have had times when I was reasonably high functioning (though not close to what I should be), though for the last year and a half I have been in decline. Yet in the late 90s I was full mental zombie, and this has happened at other times briefly. This disease changes, so long time patients often understand most of what people are going through even if they are not there themselves at this point in time. The same goes for all the other symptoms.

 

[alex3619]

On community, while this is primarily an ME and CFS community, lots of others are welcome. This includes other sick people, like those with MCS and fibro in particular, doctors, carers, researchers etc. So far as I am concerned even journalists and psychiatrists are welcome, despite the bad rep some of them have. That rep is really about specific individuals, not the professions, though do expect me to engage in fierce debate if any psychogenic psychiatrists turn up here.

 

[Cheesus]

He should be fully aware. He is the regional CFS/ME 'Champion' for the NHS and has more letters after his name than a bowel of alphabetti spaghetti. I am pretty sure his usage of the term 'CFS' is a political rejection of Myalgic Encaphalomyelitis, something he likely deems to be an inaccurate portrayal of the illness.

Oh christ that is an unpleasant thought. Pretty sure I was meant to right 'bowl'

 

[Sushi]

Thank you, appreciate your input! One of the moderators said PR does not advocate, and we all have different situations, and then I saw that PR, indeed, testified at the IOM.

I actually said:

It is not primarily an advocacy group...

As has been noted, we have large advocacy section with 32,169 posts.

Sushi

 

[alex3619]

One of the issues is not everyone is into advocacy. More particularly, some are too sick to handle it. They deserve a place to go that feels like home too, not just those who want to advocate. So PR serves many roles.

 

[Gingergrrl]

Oh christ that is an unpleasant thought. Pretty sure I was meant to right 'bowl'

@Cheesus that actually made me laugh out loud and am still laughing... so your typo brought me some happiness today

 

[Gingergrrl]

One of the issues is not everyone is into advocacy. More particularly, some are too sick to handle it. They deserve a place to go that feels like home too, not just those who want to advocate. So PR serves many roles.

@alex3619 thank you for saying this. I am a social worker in my lifelong career before I got so ill and advocacy was a huge part of my daily life and something I really enjoyed and was good at. The first moment I saw an injustice I was leading the charge. But now I am too ill to advocate for CFS which also brings me a lot of guilt.

 

[Nielk]

@alex3619 thank you for saying this. I am a social worker in my lifelong career before I got so ill and advocacy was a huge part of my daily life and something I really enjoyed and was good at. The first moment I saw an injustice I was leading the charge. But now I am too ill to advocate for CFS which also brings me a lot of guilt.

No one should ever feel guilty for what they can't do due to this disease. Sometimes, all I can do is lay in bed and just breathing takes all my energies.

In addition, just raising awareness of what this disease actually is or helping another patient out here in the forum is acting as an advocate in my opinion.

 

[alex3619]

@alex3619 thank you for saying this. I am a social worker in my lifelong career before I got so ill and advocacy was a huge part of my daily life and something I really enjoyed and was good at. The first moment I saw an injustice I was leading the charge. But now I am too ill to advocate for CFS which also brings me a lot of guilt.

I advocate now as much as I can. Its not enough, but it never will be. I had years when I could not have advocated for anything. That may happen again. We are all at different stages. There is no shame in this, the shame is for those who have deliberately ignored our disease or damaged research.

 

[SOC]

I think all the names are bad and I like what my new CFS Doctor said "Viral reactivation due to immune system impairment" (or something like that.)

That pretty much describes it for daughter and I. Now WHY we have immune impairment is the critical question....

 

[Gingergrrl]

That pretty much describes it for daughter and I. Now WHY we have immune impairment is the critical question....

@SOC I am looking over my notes and slightly misquoted him. He actually calls it, "Viral re-activation disease caused by immune impairment." It was similar to what I wrote (same meaning) but he used the word disease and I didn't want to mis-quote him! As to why this impairment occurs, he does not know but hopes that the research at OMI or elsewhere will soon find out.

 

[taniaaust1]

http://mecfs.stanford.edu/2014SymposiumVideo.html

Video 4

EEG/LORETA Studies Suggest Cortical Pathology in ME/CFS
Marcie Zinn, PhD, Mark Zinn, MM

If these researchers can replicate their findings, and it can be independently validated, then the name they half joking suggest might be appropriate: Limbic Encephalitis. Even muscle pain etc., and the full range of our cognitive deficits, match the qEEG findings. This includes:

Memory, attention issues, problems with executive function, emotional lability, delayed reactions, muscle weakness, ataxia, pain, hypersensitivity to stimuli and language deficits.

Regular EEG is not very useful, qEEG is required.Computational analysis takes five minutes. Cost is about $10,000 though.

Many who have ME have abnormal regular EEGs. 2 out of 3 of mine have been abnormal with the common ME finding.

 

[taniaaust1]

That is what I am talking about, shouldn't we all be supporting one another as patients suffering the same illness ( though with different predominant symptoms, and different levels of severity), instead of using these variations to divide ourselves?!?!

I do not consider that Im at all supporting a CFS person by implying they have the same illness as me and hence to me that would mean their condition is a life threatening one (which I view ME is) and they'd best not share drinks with others, take care who they are kissing in case its transmitted etc etc.

I would not also be supporting a "CFS" person if Im telling them to "avoid GET" (when they dont even get post exertional symptoms!! so in that case maybe GET could even help).

I would not be supporting a CFS by implying they have ME as it could mean they have another illness which may be being missed. The best I can support a CFS person is to tell them to keep seeking the answers out to their illness!

I personally think it would be very wrong to place ME stuff onto another who has CFS and push onto them to avoid all the typical things which ME people need to be careful about.

 

[taniaaust1]

But I don't see the point of unifying idiopathic fatigue patients with ME. The two groups have very little in common, other than the "F" word. If any progress is going to made in ME research, it needs to focus on ME, not on a broad group of patients with one minor and common shared symptom.

I see it as no different to putting a lot of fatigue patients in with a group of MS patients and telling them all they should see themselves with the same illness (this is exactly what Dr Patient seems to want).

I think most in this website respect that not all of us are the same (and that doesnt really matter as long as we respect each other).

 

[taniaaust1]

He should be fully aware. He is the regional CFS/ME 'Champion' for the NHS and has more letters after his name than a bowel of alphabetti spaghetti. I am pretty sure his usage of the term 'CFS' is a political rejection of Myalgic Encaphalomyelitis, something he likely deems to be an inaccurate portrayal of the illness.

The amount of letters after a drs name is meaningless as it doesnt show at all how much they know about ME and CFS (seeing it isnt even taught about usually to doctors).

 

[TigerLilea]

I would not also be supporting a "CFS" person if Im telling them to "avoid GET" (when they dont even get post exertional symptoms!! so in that case maybe GET could even help).

I have CFS and I have PEM. Always have for these past 23 years since getting CFS after a really bad tooth infection and being put on a massive dose of penicillin.

 

[Dr.Patient]

Just found this discrepancy on the ICC criteria and the ICC primer regarding mild, moderate, severe, and very severe. The PRIMER describes them more accurately, not the criteria. Mild being some reduction in activities, moderate is at least 50% reduction, severe is homebound, and very severe is bedbound.

 

[SOC]

He is the regional CFS/ME 'Champion' for the NHS

Can you explain to us non-UK folks what this means? What is a 'Champion' for the NHS? How does one get that appointment?

 

[Little Bluestem]

Oh christ that is an unpleasant thought. Pretty sure I was meant to right 'bowl'

@Cheesus, I don't know when I last laughed so loud or long.

P. S. I think you meant to write 'bowl'
P.P.S. You do realize you have ruined A Visit from St. Nicolas for me.

 

[Cheesus]

@Cheesus, I don't know when I last laughed so loud or long.

P. S. I think you meant to write 'bowl'
P.P.S. You do realize you have ruined A Visit from St. Nicolas for me.

I need to learn to read what I have written Who knows how many Christmases I have ruined.