Different criteria for "CFS/ME" around the world?

[Diana Driscoll]

Hello Everyone!
Can someone tell me if we use different diagnostic criteria to diagnose "CFS/ME" (or SEID -- who can keep up?) around the world?
I'm trying to get a feel for how we're all diagnosed (and as a dumb American, I don't know much about how other countries diagnose us).
Thanks for your input!

 

[Snookum96]

In Canada, we have the Canadian Consensus Critera which was intended for that purpose but I have yet to meet a doctor who knows what that is besides Dr. Byron Hyde who runs a non-profit researching CFS. If you're interested, here is the link: http://www.meao.ca/files/ME-Overview-English.pdf
It's a good document imo but we really only have 1 CFS dolce and he is a diagnostician only, no treatment. There are two clinics in the country that deal with CFS, I'm not sure if they use the criteria. I'm on the wait list for one and have a while to go before I find out.

 

[weyland]

In the UK today, I assume the NHS largely uses the NICE guidelines to diagnose the disease they call 'CFS/ME'. In the past, when the preeminent British ME clinicians (Ramsay, Dowsett, Richardson) were still alive and practicing medicine, they used their own various case definitions and checklists that they had developed as clinicians seeing hundreds of patients with the disease they knew as 'ME'. These include Ramsay's 1986 definition, Dowsett's London criteria, and Richardson's 2002 guidelines for doctors. You seem to be more interested in clinical versus research criteria, so I won't bother to mention the Oxford research criteria as it's largely been panned anyways.

In the US, I imagine most doctors use some interpretation of the CDC case definition to diagnose what they call 'CFS'. As you're no doubt aware, the IOM has come up with new criteria to diagnose what they are calling 'SEID'. It's not 100% clear whether this definition was meant to encompass both ME and CFS but my interpretation is that it is, unfortunately. I think this is a step backwards and away from the clarity given by the modern ME definitions below.

As @Snookum96 mentioned, 2003 brought about the Canadian Consensus Criteria, which could be used to diagnose what they called 'ME/CFS'. In 2011, the International Consensus Criteria for ME were published. This document advocated for dropping the term 'CFS' entirely and puts forward criteria they believe can be used to diagnose 'ME'. There are probably some US and Canadian doctors, most notably the well known ME/CFS specialists, using the CCC and ICC criteria to diagnose patients, but I imagine the CDC criteria are probably still the most widely used clinical criteria here in North America.

Less well known and talked about, 2007 saw the release of the Nightingale definition of ME by Dr. Byron Hyde. I imagine nobody other than Dr. Hyde himself uses this criteria, but as you would expect it's meant as an 'ME' criteria. He believes (probably correctly) that ME has nothing to do with CFS.

Beyond these I honestly have no idea what criteria other countries use to diagnose the disease. I imagine some countries don't even recognize it as a real disease still at this point which saddens me.

 

[Diana Driscoll]

In Canada, we have the Canadian Consensus Critera which was intended for that purpose but I have yet to meet a doctor who knows what that is besides Dr. Byron Hyde who runs a non-profit researching CFS. If you're interested, here is the link: http://www.meao.ca/files/ME-Overview-English.pdf
It's a good document imo but we really only have 1 CFS dolce and he is a diagnostician only, no treatment. There are two clinics in the country that deal with CFS, I'm not sure if they use the criteria. I'm on the wait list for one and have a while to go before I find out.

Thank you so much, Snookum96! Yea, it's frustrating for us all (and confusing to doctors) when no one really knows what the criteria are! Isn't it weird to think that someone in one country may have an official diagnosis, then that diagnosis could be taken away if they move? Yikes. Thank you!

 

[Diana Driscoll]

In the UK today... I imagine some countries don't even recognize it as a real disease still at this point which saddens me.

Thank you so much, Weyland! I shudder to think how many different criteria there must be -- and this may just be the tip of the iceberg. I'm not sure if there are folks from other English-speaking countries here as I wonder about Australia and others. (Imagine how many criteria there may be if we could include non-English speaking countries! Oh my!)
Yes, I know most of us are happy just to have a doctor who diagnoses us with a "real disease"!
Thank you!

 

[Snookum96]

Yes Weyland, although the country officially recognizes It as an illnesses, most of the doctors I have seen don't. Even some of the bigger teaching hospitals in Toronto that I have been to don't take it seriously.
Btw I had my first appt with Dr. Hyde a couple weeks ago. Very interesting man!

 

[JennyJenny]

Hello Everyone!
Can someone tell me if we use different diagnostic criteria to diagnose "CFS/ME" (or SEID -- who can keep up?) around the world?
I'm trying to get a feel for how we're all diagnosed (and as a dumb American, I don't know much about how other countries diagnose us).
Thanks for your input!

I believe there are 5 accepted criteria and of course different countries are doing different ones. There are actually more than that which have been created but not necessarily used or used widely and diagnosed under these others might not get you very far with disability.

UK - Oxford
US - Fukuda
Canada - CCC
There is an International Criteria and one other. And that is besides the SEID which is US and is designed for any doctor to diagnose. I think they will retain Fukdua for Research which is what it was actually developed for, there never was a clinician criteria before SEID and doctors did not know how to use a Research criteria.

There was an about.com article on it but I cannot find it right now.

UK and I believe Australia uses Oxford, Ireland broke away a year or two ago saying they would use CCC and be at the forefront of approaching this correctly. I do not trust the ME/CFS research coming out of Australia and the UK (overall) because of the criteria issues.

 

[JennyJenny]

Hello Everyone!
Can someone tell me if we use different diagnostic criteria to diagnose "CFS/ME" (or SEID -- who can keep up?) around the world?
I'm trying to get a feel for how we're all diagnosed (and as a dumb American, I don't know much about how other countries diagnose us).
Thanks for your input!

Found the article: http://chronicfatigue.about.com/od/...g-Definitions-of-Chronic-Fatigue-Syndrome.htm

There have been as many as 20 criteria over the years which is stated in the last sentence in the 2nd to last paragraph of this article: http://chronicfatigue.about.com/od/...ame-Criteria-for-Chronic-Fatigue-Syndrome.htm

 

[weyland]

I think they will retain Fukdua for Research which is what it was actually developed for, there never was a clinician criteria before SEID and doctors did not know how to use a Research criteria.

That's not true, the CCC and ICC were both created as clinical criteria. Carruthers went even further and created a clinical primer for the ICC for doctors.

 

[JennyJenny]

That's not true, the CCC and ICC were both created as clinical criteria. Carruthers went even further and created a clinical primer for the ICC for doctors.

Oh, thank you. I had heard they were all research. I know Dr. Hornig used CCC and Fukuda for each CFS patient in her Cytokine study so I thought it was a research criteria. I have also read that CCC can be difficult to use and it still takes long to get people diagnosed with the criteria as there have been those from Canada that I have met in other forums that say it took years for them to be diagnosed.

I actually think SEID is a good clinical diagnostic criteria and I know I could have been diagnosed with it 35+ years ago as I met the criteria but instead it took until 2002 when I became disabled and I was diagnosed under Fukuda. As we know a formal diagnosis still will take 6 months under SEID but doctors are being encouraged to still use it under 6 months and begin the process of diagnosis although we all know that is still too long. 3 months would suffice. I am thinking they did 6 months to make certain doctors are testing for MS, Lupus, Lime, etc. all the other diseases and illnesses that at times can seem to be ME/CFS and perhaps doing Table Tilts and so on and we all know going through tests can take months because you have to get appointments with other specialists. Plus you can have ME/CFS AND MS, Lupus, Lime, etc.

The only real problem with CCC is that SSD and SSI probably would not have recognized it under disability in the US. So even if a doctor knew of it and how to use it it was then up against the healthcare system. I am not sure if SSD/I recognizes the ICC either.

 

[Cort]

Thank you so much, Weyland! I shudder to think how many different criteria there must be -- and this may just be the tip of the iceberg. I'm not sure if there are folks from other English-speaking countries here as I wonder about Australia and others. (Imagine how many criteria there may be if we could include non-English speaking countries! Oh my!)
Yes, I know most of us are happy just to have a doctor who diagnoses us with a "real disease"!
Thank you!

Hey Wyller - a big cheese in Norway - came up with his own criteria...It takes a lot of cheek to do that. But the fact that he felt comfortable doing that indicates how loosey goosey the definition has become - you can make up your own!

I think if the IOM criteria get adopted that will help quite a bit. It won't solve the situation but the IOM is so respected there will be considerable pressure to adopt it.

 

[weyland]

Oh, thank you. I had heard they were all research. I know Dr. Hornig used CCC and Fukuda for each CFS patient in her Cytokine study so I thought it was a research criteria.

They seem to work pretty well for research criteria as well and it's nice to see studies being done using them and finding results. The recent Japanese PET study was done using only ICC and also found some interesting results. These ME criteria can only benefit research as it has been shown that they select out patients with a more severe illness compared to the CFS criteria. This is sort of the premise of OMF's big data study. Any abnormalities should be the most obvious in the sickest patients.

As we know a formal diagnosis still will take 6 months under SEID but doctors are being encouraged to still use it under 6 months and begin the process of diagnosis although we all know that is still too long. 3 months would suffice.

I think the waiting period is a step backwards. The ICC did away with it. The symptom cluster of ME is so specific that it can be diagnosed on day 1 of the illness. The sooner you are diagnosed the sooner you can be prescribed complete rest. Dr. Dowsett and Dr. Richardson both felt that early and complete rest at the initiation of the illness gave the best prognostic outcome. Sadly most of us aren't afforded this opportunity and we end up digging ourselves in deeper and deeper due to overexertion until we figure out what's wrong with us months or years later.

The only real problem with CCC is that SSD and SSI probably would not have recognized it under disability in the US. So even if a doctor knew of it and how to use it it was then up against the healthcare system. I am not sure if SSD/I recognizes the ICC either.

Is this actually a problem? I don't think they care or even ask what criteria was used to diagnose you. All they care about is that a doctor certifies that you have the disease as far as I understand.

 

[Cort]

They seem to work pretty well for research criteria as well and it's nice to see studies being done using them and finding results. The recent Japanese PET study was done using only ICC and also found some interesting results. These ME criteria can only benefit research as it has been shown that they select out patients with a more severe illness compared to the CFS criteria. This is sort of the premise of OMF's big data study. Any abnormalities should be the most obvious in the sickest patients.


I think the waiting period is a step backwards. The ICC did away with it. The symptom cluster of ME is so specific that it can be diagnosed on day 1 of the illness. The sooner you are diagnosed the sooner you can be prescribed complete rest. Dr. Dowsett and Dr. Richardson both felt that early and complete rest at the initiation of the illness gave the best prognostic outcome. Sadly most of us aren't afforded this opportunity and we end up digging ourselves in deeper and deeper due to overexertion until we figure out what's wrong with us months or years later.


Is this actually a problem? I don't think they care or even ask what criteria was used to diagnose you. All they care about is that a doctor certifies that you have the disease as far as I understand.

I agree that the waiting period is a problem although as JennyJenny points out it's more a logistical problem than anything else. A biomarker would solve that problem!

Lenny Jason has also argued that there should no new onset requirement either = people can have this from the get go...That will probably fall at some point.

The key thing for me, though, is that the symptom criteria, even if they are not perfect, are big step forward.

 

[Cort]

Oh, thank you. I had heard they were all research. I know Dr. Hornig used CCC and Fukuda for each CFS patient in her Cytokine study so I thought it was a research criteria. I have also read that CCC can be difficult to use and it still takes long to get people diagnosed with the criteria as there have been those from Canada that I have met in other forums that say it took years for them to be diagnosed.

I actually think SEID is a good clinical diagnostic criteria and I know I could have been diagnosed with it 35+ years ago as I met the criteria but instead it took until 2002 when I became disabled and I was diagnosed under Fukuda. As we know a formal diagnosis still will take 6 months under SEID but doctors are being encouraged to still use it under 6 months and begin the process of diagnosis although we all know that is still too long. 3 months would suffice. I am thinking they did 6 months to make certain doctors are testing for MS, Lupus, Lime, etc. all the other diseases and illnesses that at times can seem to be ME/CFS and perhaps doing Table Tilts and so on and we all know going through tests can take months because you have to get appointments with other specialists. Plus you can have ME/CFS AND MS, Lupus, Lime, etc.

The only real problem with CCC is that SSD and SSI probably would not have recognized it under disability in the US. So even if a doctor knew of it and how to use it it was then up against the healthcare system. I am not sure if SSD/I recognizes the ICC either.

Thirty-five years to get diagnosed! That's a good argument for SEID right there.

 

[weyland]

The key thing for me, though, is that the symptom criteria, even if they are not perfect, are big step forward.

I hope you're right. Lenny has some grave concerns about the SEID criteria which will need to be addressed.

 

[JennyJenny]

Is this actually a problem? I don't think they care or even ask what criteria was used to diagnose you. All they care about is that a doctor certifies that you have the disease as far as I understand.

I was certified and it still took me 6 years to get disability, 2 judges and 3 separate times before the judges and once the one judge made the call without me seeing him and all but blasted the other judge in a 10 page overturning of her ruling. On an illness like this if the doctor does not utilize criteria approved by the CDC, because there are no tests, then there is no proof that the doctor was using any real criteria. You also have to go through disability criteria. SSD/I doesn't care about Canada's criteria.

 

[JennyJenny]

Thirty-five years to get diagnosed! That's a good argument for SEID right there.

I have been sick over 35 but it took about 24 to get diagnosed but you are right, SEID is needed. Doctors are not diagnosing under Fukuda as they don't know how to and it is the one the CDC recognizes so their hands are tied.

The only real hope for new patients is a blood test. For me, I am pretty much past hope except for perhaps Rituximab and I bet it will not get approval for many, many years and will be reworked into a new pill by some drug company and no insurance will pay for it or if they do it will be an incredibly high co-pay. Can you say Tier 5?

 

[Cort]

I hope you're right. Lenny has some grave concerns about the SEID criteria which will need to be addressed.

Well I think he's right to worry about the lack of exclusionary factors at least in community studies. That's got to be cleaned up.

 

[Cort]

i need to do a blog on Rituxiimab - it's a different kind of drug - extremely expensive - but it should be going generic soon in the US. It will take time to get approved here for ME/CFS - if it is - but if it is the costs should drop dramatically.

I wonder about CMX001 - the herpesvirus drug with broad antiviral properties....Hopefully it will be approved next year not for ME/CFS but at least for use in the US...

I have been sick over 35 but it took about 24 to get diagnosed but you are right, SEID is needed. Doctors are not diagnosing under Fukuda as they don't know how to and it is the one the CDC recognizes so their hands are tied.

The only real hope for new patients is a blood test. For me, I am pretty much past hope except for perhaps Rituximab and I bet it will not get approval for many, many years and will be reworked into a new pill by some drug company and no insurance will pay for it or if they do it will be an incredibly high co-pay. Can you say Tier 5?

 

[JennyJenny]

i need to do a blog on Rituxiimab - it's a different kind of drug - extremely expensive - but it should be going generic soon in the US. It will take time to get approved here for ME/CFS - if it is - but if it is the costs should drop dramatically.

I wonder about CMX001 - the herpesvirus drug with broad antiviral properties....Hopefully it will be approved next year not for ME/CFS but at least for use in the US...

I would take Rituximab in a heartbeat. I am actually more suspect about the broad antiviral approach. I just don't think it is an active infection at this point. I just had a mono test as I think my doctor thought what the heck, since so many of my symptoms seem to be worsening. Negative of course. I guess I could make them do an EBV though I am pretty sure I had one in the past.