Article: Ch, Ch, Ch, Changes...Myalgic-encephalomyelitis Now and Then: 75 Years of ME

Nielk
Cort,

It must have been hard to put this together with some sense of coherence. The history of this illness (or illnesses) is so diverse and all over the place that is very confusing. I thought you did a great job putting evrything in perspective. Thank you.
 
Cort
Firestormm said:
The first paragraph in particular relates to US history, and not UK for example, right?
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Thanks Firestormm - that was definitely done from a US centric position (I belatedly recognize). I changed some parts of that paragraph to make it more accurate.

ME or myalgic encephalomyelitis has always been a preferred choice for many patients and patient support organizations particularly in the UK and Canada but the term chronic fatigue syndrome or CFS has held sway for almost sway for over 15 years in the scientific community. With the publication of the Canadian Consensus definition in 2003 and the introduction of the term ME/CFS, the term ME began to return to visibility there. The IACFSs name change to IACFS/ME and Rich Carsons Fair Name Campaign sparked name changes in several U.S. organizations and the patient community largely embraced it. Now in the International Consensus Criteria, the CFS has been dropped and ME, standing by itself has, after over 20 years, been given a new life in the research community.
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Cort
Nielk said:
Cort,

It must have been hard to put this together with some sense of coherence. The history of this illness (or illnesses) is so diverse and all over the place that is very confusing. I thought you did a great job putting evrything in perspective. Thank you.
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It was kind of agonizing actually and interesting as well. I'm sure I missed some big chunks but there did seem to be some coherence in how it all turned out (thankfully :)). Thanks.
 
Enid
Thank you very much Cort for bringing all this together and the hard work involved. Must say personally that all the symptoms listed occurred (predominating at various stages) and agree with the notion of a "core" dysfunction. That ME and so called CFS are basically the same - acute/chronic might possibly be due to the extent of initial damage or "insult" Docs use ? (in a core system) Much food for thought in your writing.
 
Cort
Enid said:
Thank you very much Cort for bringing all this together and the hard work involved. Must say personally that all the symptoms listed occurred (predominating at various stages) and agree with the notion of a "core" dysfunction. That ME and so called CFS are basically the same - acute/chronic might possibly be due to the extent of initial damage or "insult" Docs use ? (in a core system) Much food for thought in your writing.
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Thanks Enid. It is interesting how the symptoms change over time. I never had paralysis or muscle weakness - muscle pain and sore throats were more my experience - but it was much more intense in the early years. I did get better over time (and I developed some new symptoms - MCS was a big one).

It will be interesting to see how it all turns out. I think Dr. Chia would very much like to get patients tested for pathogens as early as possible. Dr. Peterson believes it gets harder to identify them as time passes. That does make sense to me but my guess is that there is a core problem that can be caused by different factors in different people. Only time (and research dollars) will tell.
 
J
Thank you Cort for this report. I was surprised!!! It was odd that none of the US groups even mentioned it beyond a very cursory, brief mention by the CAA. But ME is the definition and disease identity, not just a name change. The massive attempts for mere inclusion or add on of the term ME as a mixed or hybrid term, from the fair name and henceforth, has been met with strenuous objection. ME/CFS was never a name change, the purpose of which has always been to get rid or the damaging and demeaning CFS, which it did not do, and ME is certainly not a new name.
 
Cort
Jill McLaughlin said:
Thank you Cort for this report. I was surprised!!! It was odd that none of the US groups even mentioned it beyond a very cursory, brief mention by the CAA. But ME is the definition and disease identity, not just a name change. The massive attempts for mere inclusion or add on of the term ME as a mixed or hybrid term, from the fair name and henceforth, has been met with strenuous objection. ME/CFS was never a name change, the purpose of which has always been to get rid or the damaging and demeaning CFS, which it did not do, and ME is certainly not a new name.
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Honestly, I liked ME/CFS and thought it was the right time for it and I do think it forged the way for ME. Would it have been possible for ME to be advanced by so many researchers without ME/CFS coming first? My guess is probably not but the sight of the research community stepping forward on this issue was amazing. I thought it would take years more - and yet here we are. This suggests to me that something has shifted in the research community.

More articles on are on the way, by the way.
 
D
A very good succinct summary, written in a way that would suit layman, journalist and old hand, equally well - not always easy to do - and which allows for reflection from all. Well done. John
 
J
Cort wrote: "Honestly, I liked ME/CFS and thought it was the right time for it and I do think it forged the way for ME. Would it have been possible for ME to be advanced by so many researchers without ME/CFS coming first? My guess is probably not but the sight of the research community stepping forward on this issue was amazing. I thought it would take years more - and here we are. This means to me that something has shifted."


Cort, The ME/CFS only further obscured the real issue of recognizing ME. ME/CFS was stopped at the fair name level and then resurrected again under the guise of some Unity campaign -- which was certainly not the case within the patient community. That Globe poll from a few months ago asked for a vote on what to call it, and around 24% said CFS or ME/CFS and 73% chose other.

ME/CFS makes no sense, diagnostically or even on the public/awareness front. No one knows what it means (as it has no established meaning anywhere). At best oh that's CFS but added ME to keep patients happy <winkwink> Going on about ME/CFS research at HHS? There's no such thing.

It was really "amazing," it was the real ME advocates who pushed the issue forward and put pressure on the researchers as well. This is what's been missing in advocacy. If anything it's been go along to get along and give them what they want and make the best of it.
 
Cort
Cort, The ME/CFS only further obscured the real issue of recognizing ME. ME/CFS was stopped at the fair name level and then resurrected again under the guise of some Unity campaign -- which was certainly not the case within the patient community. That Globe poll from a few months ago asked for a vote on what to call it, and around 24% said CFS or ME/CFS and 73% chose other.

ME/CFS makes no sense, diagnostically or even on the public/awareness front. No one knows what it means (as it has no established meaning anywhere). At best oh that's CFS but added ME to keep patients happy <winkwink> Going on about ME/CFS research at HHS? There's no such thing.

It was really "amazing," it was the real ME advocates who pushed the issue forward and put pressure on the researchers as well. This is what's been missing in advocacy. If anything it's been go along to get along and give them what they want and make the best of it.
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Honestly, how can you say that ME/CFS obscured the real issue of recognizing ME? ME was added to the term with the idea in the end that the CFS would be dropped and ME (or another suitable term) would be added. It was always a transition term. Since the creation of the Canadian Consensus Criteria and with Rich Carson's "Fair Name Campaign" whose Board included Dr Peterson, Klimas, Cheney, Jason, Komaroff to name a few the IACFS changed its name, many organizations in the US added it to their name and it is now used by the DHHS - vastly increasing its credibility in the research. Rather quickly ME was on the tongues of researchers and patients.

Contrast that with its history beforehand - no integration at all into the research community with ME disappearing from the scientific literature since 1988. My guess is that co-authors of the ICC embraced 'ME' not just because it was the right thing to do but because it was the right time to do it and it was the right time because the term 'ME/CFS' had prepared the ground for it - as was always intended to happen.

I'm not sure who the 'real ME' advocates are but in my opinion the best thing they could have done to advance their cause would have been to think strategically and advance their cause would have been to embrace 'ME/CFS' realizing it was always intended to be a bridge to 'ME" (or another better term). I was part of the Fair Name Campaign and I remember vividly Rich Carson exclaiming his fervent desire for a swift transition to ME.
 
J
Cort wrote: "Honestly, how can you say that ME/CFS obscured the real issue of recognizing ME? ME was added to the term with the idea in the end that the CFS would be dropped and ME (or another suitable term) would be added. It was always a transition term. Since the creation of the Canadian Consensus Criteria and with Rich Carson's "Fair Name Campaign" whose Board included Dr Peterson, Klimas, Cheney, Jason, Komaroff to name a few the IACFS changed its name, many organizations in the US added it to their name and it is now used by the DHHS - vastly increasing its credibility in the research. Rather quickly ME was on the tongues of researchers and patients.

Contrast that with its history beforehand - no integration at all into the research community with ME disappearing from the scientific literature since 1988. My guess is that co-authors of the ICC embraced 'ME' not just because it was the right thing to do but because it was the right time to do it and it was the right time because the term 'ME/CFS' had prepared the ground for it - as was always intended to happen.

I'm not sure who the 'real ME' advocates are but in my opinion the best thing they could have done to advance their cause would have been to think strategically and advance their cause would have been to embrace 'ME/CFS' realizing it was always intended to be a bridge to 'ME" (or another better term). I was part of the Fair Name Campaign and I remember vividly Rich Carson exclaiming his fervent desire for a swift transition to ME."


Cort, The real issue to ME advocates is to recognize ME. We do not want a CFS dx. So creating ME/CFS is the antithesis.

Adding a name or label is not the issue. Add ME and CFS will be dropped? How will this happen, we are advertising ME/CFS and parading around with signs and slogans about ME/CFS? It is further promoting and reinforcing it. So then say nah just kidding there's no such thing it is just a transition term?

How is this strategic thinking? Pure logic is defied. We say X is not Y. Then we go on and on about X/Y is this and X/Y research.... Then bemoan our fate when no one gets it? Sorry, we can do better than that.

I am quite sure that the ICC authors did it as the right thing to do, in spite of the ME/CFS nonsense and distractions. Because it is the right thing to do medically, scientifically and publicly, so I will give them the credit on this one.
 
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