Disease poll

What disease do you have?

  • Real true ME as per Melvin Ramsey and Canadian Consensus Criteria CCC

    Votes: 10 66.7%
  • CFS as per Oxford and CDC criteria

    Votes: 4 26.7%
  • I have no idea which of the two I have and I do not care but it is one of them

    Votes: 3 20.0%
  • I have no idea which of the two I have but I would like to know which one exactly

    Votes: 2 13.3%
  • I really understand that I do not have Ramsey ME nor CFS per CDC and Oxford Criteria

    Votes: 1 6.7%
  • I probably am misdiagnosed with Ramsey CCC ME but in fact I have Oxford CDC CFS

    Votes: 1 6.7%
  • my persistent immune system problems may have been wrongly labelled Ramsey CCC ME or Oxford CDC CFS

    Votes: 1 6.7%
  • Probably have Ramsey CCC ME but fighting to get it correctly diagnosed/treated

    Votes: 1 6.7%
  • I have lyme and ccc ramsey ME

    Votes: 2 13.3%
  • i have autism and ccc ramsey ME

    Votes: 1 6.7%
  • i have lyme or autism that drags on despite antivirals n antibiotics

    Votes: 1 6.7%
  • i have lyme or autism but dont think I also have ccc ramsey ME

    Votes: 1 6.7%
  • i think i have a completely different neuro or immune disease and not me cfs lyme or autism

    Votes: 1 6.7%
  • a very bad lingering viral infection but not ME

    Votes: 1 6.7%
  • a bit of this a bit of that something blue nothing new

    Votes: 1 6.7%

  • Total voters
    15
  • Poll closed .
E

EYAKLLE

Guest
Disease poll.......
will be closed after 6 months
 
Last edited by a moderator:

Joanna

Member
Having read and carefully considered all criteria and alternate diagnoses, I am reasonably certain that I have ME as per CCC criteria. However, I have only a Fibromyalgia diagnosis. There is no ME specialist in my area who treats this as a bio-medical illness. Once I got my Fibromyalgia diagnosis, any investigative measures stopped other than routine blood tests which they offer to do every time you go in asking for help. I was lucky to have read extensively about OI and to have succeeded in getting a referral to a local cardiologist who is researching OI conditions. She diagnosed me as having Ehlers Danlos Syndrome, but also does not dispute my Fibromyalgia diagnosis which was made originally by a GP in the US after a lot of eliminatory investigations and tests, and confirmed by a local Rheumatologist several years later in a very hurried tender point test. I have more symptoms of ME, in fact nearly all on the list, but many are not severe enough to cause me constant problems. I am mostly bed bound due to pain and exhaustion and have the characteristic PEM symptoms which typically happen several hours after more than my usual low level of exertion, and get still worse within the next 24 hours after that. My OI is keeping me from the quality of life I could reasonably have otherwise. I am accustomed to pain and am only given pain medications at high doses. I will not go to another Rheumatologist for assessment, as the ones nearby were involved with the same people who did the PACE studies and they have a decided bias, plus are known to treat with CBT and GET. I don't need to have it appear on my health records that I have declined these therapies and continue to be bedbound due to resisting treatment. Under the current government programmes, and with future measures promised to cut welfare still further, that could mean severe cuts to my disability benefits which allows me to pay for a part time carer. It is difficult to face life with no possible treatment except for Midodrine to try and raise my blood pressure in order to treat my OI. I am handling the pain pretty well now that I can keep a relatively stable activity level thanks to personal care being provided.
 

madie

Well-Known Member
It's confusing that you lumped Ramsay and CCC together. I completely fit the CCC descriptors, but did not have a viral onset. I don't even remember the onset, it was so gradual.

So I said yes ME.
 
E

EYAKLLE

Guest
It's confusing that you lumped Ramsay and CCC together. I completely fit the CCC descriptors, but did not have a viral onset. I don't even remember the onset, it was so gradual.

So I said yes ME.
Anything viral happen during the gradual onset ?
 

madie

Well-Known Member
If yes, it wasn't memorable (meaning particularly awful or unusual). I had 2 young children, and wouldn't have noticed if I shared their flus and colds.
 

Empty

Well-Known Member
Having read and carefully considered all criteria and alternate diagnoses, I am reasonably certain that I have ME as per CCC criteria. However, I have only a Fibromyalgia diagnosis. There is no ME specialist in my area who treats this as a bio-medical illness. Once I got my Fibromyalgia diagnosis, any investigative measures stopped other than routine blood tests which they offer to do every time you go in asking for help. I was lucky to have read extensively about OI and to have succeeded in getting a referral to a local cardiologist who is researching OI conditions. She diagnosed me as having Ehlers Danlos Syndrome, but also does not dispute my Fibromyalgia diagnosis which was made originally by a GP in the US after a lot of eliminatory investigations and tests, and confirmed by a local Rheumatologist several years later in a very hurried tender point test. I have more symptoms of ME, in fact nearly all on the list, but many are not severe enough to cause me constant problems. I am mostly bed bound due to pain and exhaustion and have the characteristic PEM symptoms which typically happen several hours after more than my usual low level of exertion, and get still worse within the next 24 hours after that. My OI is keeping me from the quality of life I could reasonably have otherwise. I am accustomed to pain and am only given pain medications at high doses. I will not go to another Rheumatologist for assessment, as the ones nearby were involved with the same people who did the PACE studies and they have a decided bias, plus are known to treat with CBT and GET. I don't need to have it appear on my health records that I have declined these therapies and continue to be bedbound due to resisting treatment. Under the current government programmes, and with future measures promised to cut welfare still further, that could mean severe cuts to my disability benefits which allows me to pay for a part time carer. It is difficult to face life with no possible treatment except for Midodrine to try and raise my blood pressure in order to treat my OI. I am handling the pain pretty well now that I can keep a relatively stable activity level thanks to personal care being provided.

I can not read such big blocks of text @Joanna. would you be able to edit your post and break it up into smaller paragraphs?
 

San Diego

Well-Known Member
@EYAKLLE

I don’t understand this poll. Are you trying to get us to diagnose ourselves and even second guess the doctors who diagnosed us? Are you trying to diagnose us? I don’t get it.

Based on your other posts, it would seem you are determined to define “real true ME”. Perhaps if you could tell us what that is (your definition) this poll would make more sense.

Thanks.
 
E

EYAKLLE

Guest
@EYAKLLE

I don’t understand this poll. Are you trying to get us to diagnose ourselves and even second guess the doctors who diagnosed us? Are you trying to diagnose us? I don’t get it.

Based on your other posts, it would seem you are determined to define “real true ME”. Perhaps if you could tell us what that is (your definition) this poll would make more sense.

Thanks.
I think madie made a damn good point about ccc and ramsey being different too.

If misdiagnoSEEEEEES are happening then yes maybe u need to responsibly empower yourself and find true experts


http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/page-3
 

San Diego

Well-Known Member
I think madie made a damn good point about ccc and ramsey being different too.

If misdiagnoSEEEEEES are happening then yes maybe u need to responsibly empower yourself and find true experts


http://www.healthrising.org/forums/threads/rituximab-study-update-researchers-focus-on-rare-gene-variant.4319/page-3
If the point you think you made isn’t understood by your audience, you didn’t make a “damn” good point.

I did nothing but ask you to clarify. There is much overlap on your categories in this poll. I find it confusing, and I don’t appreciate the cursing and all caps, nor the insinuation that I haven’t “responsibly empowered” myself for " diagnosEEEEEEESSSSS “ from “true” experts. Perhaps you are just trying to make some point that I have yet to understand, but your method of doing so is insulting, particularly for those of us who have fought for years (or decades!) to get proper help and diagnosis.

I’d appreciate it if you could answer my original questions:
What is your definition of “true” ME and why is this of such concern to you?
 

Who Me?

Well-Known Member
@San Diego @weyland and I have all asked you to define "true ME" and show us where you got that. You have yet to answer that crucial question

In my 20 plus years of being sick with diagnoses from 2 separate doctors not once did anyone say that they used a certain diagnostic criteria

And never have I ever heard anyone, not a researcher, no one, ever talk about True ME

So we want you to show where you got the information you are basing this poll on. That's not too much to ask and shouldn't be that hard

Back up what you say.
 
E

EYAKLLE

Guest
True ME is the ME of Ramsey as per his guidelines kindly linked into this thread above by tandrsc.

If a Psychiatrist diagnoses you with CFS then is that the same CFS as when an immunologist diagnosis it ? Is it not disturbing that this is a SHARED diagnosis between medical specialities ?? Would a psych diagnose parkinsons single handedly? No Would a neurologist diagnose depression singlehandedly? No. It seems any dr could diagnose CFS from a psychiatrist to a dentist ! Hence,yes,in that context there is a real true ME out there just by default ! And those need to be distinguished.
Answered your question ? I didnt get it from anywhere. It s common sense. People have to realize what they have or dont have n be reclassified.
I think there should be an extra voting option for ramsey ME but we can do another one later for the first option voters perhaps we ll see if useful.
 
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Who Me?

Well-Known Member
Nowhere that I saw does he call it True ME. Only you are calling it True ME. Why is his definition truer than anyone elses? That is the question? The definition of 'true' in this case is still only one person's opinion and not based on facts.

And as I've said before, the US does not recognize ME as a diagnosis so this poll is irrelevant to us.
 

weyland

Well-Known Member
Why is his definition truer than anyone elses?
While his definition may not necessarily be "truer" than others, I think there is a lot of reason to pay attention to it. There is an important continuity and homogeneousness to it. He and his close colleagues spent close to three decades seeing patients (both epidemic and endemic) with this disease in a relatively small geographic area before his description of the disease was published. As far as I am aware, he never described the disease has having a heterogeneous nature, which is in stark contrast to the way CFS is described here in the US, where it's openly admitted that it's probably not just one disease state.

I think this has extremely important implications for diagnosis, research, and treatment.
 

Who Me?

Well-Known Member
I guess I just don't care. By the time they figure it out I'll be long gone. And even when they figure it out it'll be years before it works its way into mainstream medicine. IMO

The most and best help I've gotten is from people on forums who don't care about definitions or who said what and when.

You had said you weren't around in 2009 with the XMRV mess. I was. I remember people were running around falling all over themselves getting tested.

I sat back and watched, thinking why rush to get tested, spend that money when there is no treatment? And then it all hit the fan and those that pinned all their hopes on it were devastated. I escaped unscathed.

I never have and won't pin all my hopes on just one thing. It makes no sense. I could care less about a definition. T In the mean time I'll listen to smart people on the forums. They've been more help than any doctor I've seen. Dr Vincent so far is the exception.
 

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