Will S.E.I.D. be accepted as (be proven to be) valid?

[Hope123]

@Sean - You're right about the work not disappearing (just because of a name change) but there will be significant questions about who that research applies to when an unvalidated set of diagnostic criteria are used.

Unvalidated diagnostic criteria might not be a huge issue from a clinical perspective (and then it again it may be a disaster if the diagnosis rates sky rocket because providers start diagnosing a lot of people without ME as having SEID, rendering the diagnosis meaningless). However, it will assuredly be a major issue when it comes to research.

The SEID diagnostic criteria has never been validated (think PACE trial, the Oxford criteria and how that study has been viewed given the known properties of the Oxford criteria - thanks to people like Lenny Jason). That's a huge problem for a criteria you are hoping will be universally adopted. My guess is that this is likely a deal breaker once folks start to appreciate the implications.

I would also add that neither have the CCC, ME-ICC, or Ramsey ME criteria been validated; testing criteria parts is not the same as validating the whole. There have been recent papers, including some by Jason asking for studies to come up with better definitions. If we're going to apply that type of criticism to Oxford (which I think is justified), we can't just say "But that doesn't apply to what (however, "what" is defined) I like/ believe in/ etc." In fact, this is another gap I see in the research -- I'm surprised no one has tried to validate these criteria in the last decade (even with the poor funding picture, there are things that could have been done) -- and even the protest letter from experts notes that CCC needs further research, refinement.

Science to me is not about picking and choosing what I *want* to be right; it's about trying to find the truth regardless of how I feel about it. I've participated in projects where the data were contrary to what I initially believed. I understand some people don't function that way but that is how medicine/ science ideally functions. We've already seen the problems with prioritizing beliefs/ conjecture/ opionion ala people who want to believe that this illness is an exercise phobia or can be treated with GET/CBT -- they went with their beliefs, not what the evidence showed. As a scientist, I also am alert to the need to change my ideas as the evidence shifts, not cling onto things just because it's tradition or the most popular viewpoint. That would not be good science.

Also, the recommendations say specifically for the criteria to be re-visited in no less than 5 years and the explanation in the text is that the criteria can be modified to include any new research findings. The Committee worked with existing evidence as detailed in the report. There is no presumption this is the final word.

It's also difficult to predict whether the numbers diagnosed will rise or fall ahead of the criteria being applied. As a physician, the symptom complex described is pretty unique to me and not something I see when I look back on my practice. So the numbers may actually do the reverse, that is go down, much as when ME-ICC or CCC criteria are applied in papers to people with CFS, it's only a % (50% in the Nacul study) of people with CFS who fit CCC or ME-ICC.

It's a long report so I understand people have not had a chance to read it entirely but many of the issues people believe are missing from the report are in it. It's just not immediate if you haven't given a through look. One thought is look at the table of contents and exec summary and pick out which items you want to read. I've read numerous IOM reports -- related to my pre-CFS like -- and this is usually how I start.

 

[Snow Leopard]

This is what happens when you let a committee invent a name.

So yet another name that will further divide people.

Soon there are going to be so many slashes in the name that we're going to call it slash-slash disease for short.

 

[Sean]

The Disease With No Name.

TDWNN

Add vowels to suit yourselves.

 

[brenda]

This is very clever wording that merely says that these people experience genuine physical symptoms which should be taken seriously and treated (ha more money for the pharmaceutical companies). It is not saying that the etiology of the illness is biochemical. I think it will make things worse not better.

 

[Gingergrrl]

This is very clever wording that merely says that these people experience genuine physical symptoms which should be taken seriously and treated (ha more money for the pharmaceutical companies). It is not saying that the etiology of the illness is biochemical. I think it will make things worse not better.

I don't like the name either but I am not sure how it ties in with making more money for pharma? If the new name in any way leads doctors to do more testing that uncovers an alternate treatable diagnosis or leads to management of CFS symptoms (like meds for OI & POTS, or an anti-viral, etc) then to me, this is a good thing!

 

[Gingergrrl]

Soon there are going to be so many slashes in the name that we're going to call it slash-slash disease for short.

Soon we will be ME/CFS/SEID which takes more effort to type than just to give us some f@$&#ing funding.

 

[redviper]

I'm alright with this, I think this is a step in the right direction for our community. The term CFS was just such a hindrance for our community that almost anything else is better. In addition, the report recognized the significant and severe nature of the disease, which is more than we have witnessed before in America. Plus remember this disease is a global issue, so it remains to be seen if other countries will adopt the terminology or criteria. I live in Canada, so it will be interesting to observe the effect here.

I can understand why some people are upset, but this is still a significant achievement for the ME community, which has been rejected and discredited at pretty much every opportunity.

 

[alex3619]

Validation of criteria is almost impossible without biomarkers. This is in fact a huge problem in psychiatry where it is not known which if any diagnoses are real disease entities, or just convenient labels. Even the ME definitions had this problem.

There is a reasonable chance we may have strong candidate biomarkers soon, then validated pathophysiology biomarkers, then finally validated diagnostic biomarkers. What may happen at that point is any definition may fracture into subgroups.

We have candidate pathophysiology biomarkers right now, quite a few of them, but they all need more research. In the meantime these markers do show physiological problems in the people in which they are found positive.

 

[Kati]

Very interestingly (and unfortunately)the choice of words brings a negative connotation.

Intolerance implies something is assessed unacceptable. Therefore it is subjective, not objective. Collapse is objective, not subjective because people can observe it. I have objection to the name which is to literal, and only explains one symptom. My memory lapses makes it difficult to remember what the letter mean.

I wonder how insurance companies will interpret this new diagnosis.

I must admit that I agree with whoever said it (likely Dr Rowe) that the choice of name was extremely difficult and that there was no perfect match for our disease. ME, while patients are quite attached to it, has apparently failed to explain disease pathophysiology and myself I have encountered a lot of baffled Drs when I used the ME terminology. I think we all agree the CFS word has to go.

The Washington Post quoted Dr Rowe saying that it may not be a forever name. I find great comfort with that.

Also for the dissidents, remember that the report has been reviewed by Dr Peterson. I wonder what he'd have to say. I would also love to hear from Dr Klimas.

 

[Sean]

It's a step in the right direction.

A critical step, that opens a few serious doors.

 

[brenda]

I don't like the name either but I am not sure how it ties in with making more money for pharma? If the new name in any way leads doctors to do more testing that uncovers an alternate treatable diagnosis or leads to management of CFS symptoms (like meds for OI & POTS, or an anti-viral, etc) then to me, this is a good thing!

New name new treatment. CBT and graded excercise are out, but then, they did not make PHARMA any money. It is the intolerance that will be treated with some kind of psychotropic. Just wait and see. And we will be forced into taking it.

 

[user9876]

@Sean - You're right about the work not disappearing (just because of a name change) but there will be significant questions about who that research applies to when an unvalidated set of diagnostic criteria are used.

Unvalidated diagnostic criteria might not be a huge issue from a clinical perspective (and then it again it may be a disaster if the diagnosis rates sky rocket because providers start diagnosing a lot of people without ME as having SEID, rendering the diagnosis meaningless). However, it will assuredly be a major issue when it comes to research.

The SEID diagnostic criteria has never been validated (think PACE trial, the Oxford criteria and how that study has been viewed given the known properties of the Oxford criteria - thanks to people like Lenny Jason). That's a huge problem for a criteria you are hoping will be universally adopted. My guess is that this is likely a deal breaker once folks start to appreciate the implications.

Remember these are clinical criteria and not research criteria. They are different and it is important that in clinical criteria we do not miss people out so that they become the undiagnosed.

I think what will be key is the diagnostic questionnaires that they suggest should be produced along with any guidance about treating symptoms. They acknowledge that there are a variety of different symptoms that they don't list that can be treated. What they have tried to do is get at what they see are common symptoms in all patients.

 

[user9876]

This is what happens when you let a committee invent a name.

So yet another name that will further divide people.

Soon there are going to be so many slashes in the name that we're going to call it slash-slash disease for short.

The real problem is not the name but the attitude of people and in particular doctors who refuse to believe or just enjoy belittling their patients. A new name may help for a while but I think what ever the name those doctors will still make jokes and dismiss this disease. I suspect it will take a long time to change that culture even after there are drug treatments and research shows cause.

Its worth saying that their lack of ability to come up with a name based on cause rather than symptoms shows the complete lack of research that has been carried out.

Perhaps the most important thing is not the name change but the dissemination plans they talk about to accompany the name change with education and information.

 

[Ecoclimber]

The real problem is not the name but the attitude of people and in particular doctors who refuse to believe or just enjoy belittling their patients. A new name may help for a while but I think whatever the name, those doctors will still make jokes and dismiss this disease. I suspect it will take a long time to change that culture even after there are drug treatments and research shows cause.

Its worth saying that their lack of ability to come up with a name based on cause rather than symptoms shows the complete lack of research that has been carried out.

Perhaps the most important thing is not the name change but the dissemination plans they talk about to accompany the name change with education and information.

Any doctor who refuses to treat you, belittles you, dismisses you and the disease and does not treat the diisease or conduct the correct lab, will leave himself open to a malpractive suite. Since it is labeled now a disease, he is required to treat it as such. If you feel belittle than file a complaint with state health board if located in the U.S. There are standards both professionally and ethically which state do the patient no harm. He is required to keep current with the latest information in his field or he could lose his license. You be the boss and tell hm what he is required to do.or else you will file a complaint with the appropriate medical/health board.

 

[ruben]

The new name is in no way appropriate. It basically implies we're generally ok but exertion makes us unwell. But of course as we know we were unwell BEFORE any exercise. The new name surely too contradicts why "graded exercise" should be used as a treatment

 

[Scarecrow]

Remember these are clinical criteria and not research criteria. They are different and it is important that in clinical criteria we do not miss people out so that they become the undiagnosed.

This my sole reservation about making PEM mandatory. It will exclude those people who don't have a clear cut severe onset, many of whom don't exhibit PEM in the early months / years of illness. This will potentially leave them vulnerable to inappropriate psych treatments, exacerbating what was a much milder form of illness.

It's an imperfect world. I recognise that PEM is a hallmark but, still, I'm conflicted about this.

 

[Gijs]

I think the new criteria are much, much, much better then Fukuda and ICC. PEM or Exertion intolerance is the hallmark of this disease. This key feature can be measured by repeated (24 or 48 hour) bicycle test and gene activity. Cognitive impairment can be measured also. This can be the start for more objective criteria. I do not think the new name is perfect but a start. I wonder if people with milder form have ME or something else. Seid is a new subgroup. I know people how can bicycle for 20 miles or more on a day, in my opion you don't have ME at all.

 

[Scarecrow]

I wonder if people with milder form have ME or something else. Seid is a new subgroup.

Well, if they are not included in research and compared to people with PEM, we'll never know. My prediction is that SEID is not a subgroup. It's an umbrella term and that subgroups within SEID will be identified.

I know people how can bicycle for 20 miles or more on a day, in my opion you don't have ME at all.

There are times in the last 30 years that I could have done that - and more - but I wouldn't have a hope in hell now. Relapse and remission?

 

[user9876]

This my sole reservation about making PEM mandatory. It will exclude those people who don't have a clear cut severe onset, many of whom don't exhibit PEM in the early months / years of illness. This will potentially leave them vulnerable to inappropriate psych treatments, exacerbating what was a much milder form of illness.

It's an imperfect world. I recognise that PEM is a hallmark but, still, I'm conflicted about this.

Yes that concerns me. I have two concerns one is what happens to patients who don't have PEM but also what happens to patients who have PEM but with various cognitive issues haven't realized. The latter point is an issue for the diagnostic questionnaires.

I think there is also a point for people who are pacing well how much PEM is actually there. (i.e. if people are avoiding activity to the point where is causes PEM how is this noticed/dealt with in the diagnostic system.

 

[user9876]

Any doctor who refuses to treat you, belittles you, dismisses you and the disease and does not treat the diisease or conduct the correct lab, will leave himself open to a malpractive suite. Since it is label now a disease, he is required to treat it as such. If you feel belittle than file a complaint with state health board if located in the U.S. There are standards both professionally and ethically to do the patient no harm. He is require to keep with the current information in his field or he could lose his license. You be the boss and tell hm what he is require to do.or else you will file a complaint with the health board.

Did you see the comments on the medscape article.
See http://forums.phoenixrising.me/index.php?threads/this-is-what-were-up-against.35468/#post-556957

Also I would say this is a very American view if you complained about a doctor in the UK because they treated a patient with ME as if ME didn't exist then the doctor would be rewarded and you would be accused of harassment.