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

[adreno]

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.

If the patients have never experienced PEM, do they really have ME/CFS, or perhaps something else?

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.

Why would they be pacing in the first place, if they didn't experience PEM?

 

[user9876]

Why would they be pacing in the first place, if they didn't experience PEM?

My point is that the diagnostic system needs to deal with this case. For example, if you asked someone who was pacing well when was the last time you had PEM or do you have PEM more than 50% of the time you may get an answer that excludes them simply because they are pacing well and able to not over do things.

 

[user9876]

If the patients have never experienced PEM, do they really have ME/CFS, or perhaps something else?

We don't really know because we don't understand the mechanisms behind ME or PEM. So its hard to make any sensible conclusion so why not keep anyone together. However, I do think care should be taken to look for other things wrong and perhaps this should be increased when typical symptoms (such as PEM) are not presented.

Could someone with a mild ME not really see much PEM because they are also generally inactive?

 

[Gijs]

We don't really know because we don't understand the mechanisms behind ME or PEM. So its hard to make any sensible conclusion so why not keep anyone together. However, I do think care should be taken to look for other things wrong and perhaps this should be increased when typical symptoms (such as PEM) are not presented.

Could someone with a mild ME not really see much PEM because they are also generally inactive?

According to the new criteria you can only have SEID if you have PEM or exertion intolerance. So if not you have something else.... it is that simple.

 

[Snow Leopard]

Some of you whom are cleverer than me, might be able to come of with alternative names with acronyms like FUND-US, LISTEN, CHANGE etc.

PS, the name change is deliberately bad right? To show what a designed-by-committee name looks like? Or perhaps to make us want to stick with what we've got?

 

[CBS]

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.

HHS would have been far better off spending the money on that additional research. I woke today wondering how much of the IOM effort was rebranding intended to distance itself from the CDC's history with ME.

I agree that we are likely getting close to physiological biomarkers for sub-groups. When that happens, the fracturing will occur and this will largely become irrelevant, especially for those in the groups that were cleaved from whatever ME is called at that time.

 

[alex3619]

According to the new criteria you can only have SEID if you have PEM or exertion intolerance. So if not you have something else.... it is that simple.

Which is the hallmark of ME. This moves us closer to an ME definition than a chronic fatigue definition.

 

[CBS]

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.

Hi @Kati

Four weeks ago I sat down with my primary care doc and he asked me to explain the history of ME names to him. I told him that ME was actually the original name for a sub-group of CFS patients and that while CNS inflammation had not been definitively established, some new evidence (Montoya's study) as well as some anecdotal (autopsy, basal ganglia) evidence was pointing in that general direction for what was likely to be a significant percentage of patients.

I also suggested that the hope was that biomarkers would soon help identify specific biological processes in sub-groups of patients. He had absolutely no issue with the use of ME. In my view, the committee threw out the good for the perfect when physicians understand that lots of medical terminology is infused with historical errors and presumptions.

I wish the committee had had the courage to say that yes, ME may have it's issues (muscle pain may not be a primary issue for all patients, CNS inflammation needs more support) but it is as good as anything else and we need to stop wasting time and distracting everyone from the task of doing real research and asking substantive questions (this is a $29 Billion dollar a year disease in the US with profound personal cost to patients and their families - where is the damned money??!)

 

[CBS]

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.

Even if these are just clinical criteria, they lose their value if they can't distinguish between an ME patient and a severely depressed patient (remember that there is guidance, and rightly so, that other conditions are not exclusionary). Getting disability approved by a judge, or a procedure/medication covered by insurance could be made more difficult if the diagnostic criteria leave non-specialists and others unable to distinguish between patients with differing medical issues.

 

[CantThink]

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.

I agree - plus you risk being 'blacklisted'... I know one person this happened to after making a formal complaint (no doc wanted to touch them with a barge pole and the doctors all closed rank). They warned me not to complain.

 

[CBS]

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.

As a US citizen, I am very torn about our health care system. It is extremely unfair and the profits being made by our insurance and pharmaceutical companies are obscene. At the same time, I personally have benefited from the freedom to fire your doctor (provided you have the resources) as I am a major pain in the ass when it comes to demanding respect and appropriate treatment. I am quite sure that in a system with a more egalitarian distribution of healthcare resources and that harshly punishes questioning the medical "authorities," I'd had been locked up decades ago.

I do hope that by raising hell in one of the areas that tolerates it, that I am not doing harm elsewhere.

 

[user9876]

As an American, I am very torn about our health care system. It is extremely unfair and the profits being made by our insurance and pharmaceutical companies are obscene. At the same time, I personally have benefited from the freedom to fire your doctor (provided you have the resources) as I am a major pain in the ass when it comes to demanding respect and appropriate treatment. I am quite sure that in a system with a more egalitarian distribution of healthcare resources and that harshly punishes questioning the medical "authorities," I'd had been locked up decades ago.

I do hope that by raising hell in one of the areas that tolerates it, that I am not doing harm elsewhere.

I was thinking less of the healthcare system and more of the idea of suing people as the American attitude. Enforcing any form of accountability or transparency can be very hard in the UK.

 

[CBS]

I was thinking less of the healthcare system and more of the idea of suing people as the American attitude. Enforcing any form of accountability or transparency can be very hard in the UK.

Not sure anyone here is suing anyone over anything other than private disability benefits. As long as doctors are meeting the "Standard of Care," which is essentially ignoring ME patients -no agreed upon treatment and the CDC instructing doctors not to do more than the absolute minimum of testing, there is no basis for a suit. Really thankful for the thoughtful docs that, in spite of this, do their best for us.

 

[Scarecrow]

Could someone with a mild ME not really see much PEM because they are also generally inactive?

Yes. Spot on.

 

[Scarecrow]

According to the new criteria you can only have SEID if you have PEM or exertion intolerance. So if not you have something else.... it is that simple.

Actually, it isn't quite that simple. If you have gradual or staged onset PEM isn't likely to manifest itself in the early stages. If a person later expresses PEM, did they not have ME/CFS before then? If there is clear continuity in the illness, then obviously they did. Whether you achieve diagnosis is another matter.

 

[Wally]

Asking for a favor from any ME, CFS or SEID patient or other Forum member.

I am a bit cognitively challenged this morning and I need to find links that I can post to the Canadian Consensus Criteria and the International ME/CFS Primers.

Sorry for posting in this thread, but it is where I found some of you lurking about.

 

[CBS]

Asking for a favor from any ME, CFS or SEID patient or other Forum member.

I am a bit cognitively challenged this morning and I need to find links that I can post to the Canadian Consensus Criteria and the International ME/CFS Primers.

Sorry for posting in this thread, but it is where I found some of you lurking about.

Some of the links on this page are dead but you should be able to find what you are looking for here: http://www.investinme.org/InfoCentre Guidelines.htm

 

[SOC]

Actually, it isn't quite that simple. If you have gradual or staged onset PEM isn't likely to manifest itself in the early stages. If a person later expresses PEM, did they not have ME/CFS before then? If there is clear continuity in the illness, then obviously they did. Whether you achieve diagnosis is another matter.

People with AIDS had this same issue in the early days. At first it was thought that only the severely ill people had the disease. It was only after the root cause was found that they realized the many people that appeared mostly healthy were also suffering from the same condition, just in an earlier stage. Now, people with the original condition studied are called AIDS patients and have to have reached a certain stage in the progression for that label, while "HIV-positive" is used for the rest of the PWC.

I suspect this has occurred in other conditions as well. I have known people who weren't diagnosed officially with MS in the earliest stages, although their doctors were suspicious and watching carefully for the biomarker to appear. Sometimes the "atypical" label is attached at that point.

Before the research is complete, it's practically impossible to identify all patients with the condition, especially those with milder forms. For all we know, we all have a genetic condition that has been with us since birth and we've been "ME-positive" all our lives. Perhaps it was only after the illness progressed to a certain point that it was identified as pathological.

I'm not sure there's a lot we can do if patients with the mildest form don't have PEM or other easily identified specific characteristics of the illness... other than push for sound research into the cause of the condition and clear biomarkers.

 

[Wally]

Some of the links on this page are dead but you should be able to find what you are looking for here: http://www.investinme.org/InfoCentre Guidelines.htm

Thanks @CBS it is great to have people like you on my S.I.D.E. , especially when Wally is feeling a bit out of sorts today without much sleep last night.

 

[beaker]

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.

I have been sick in the US for almost 30 years. There has only been one. ONE drug that has attempted to get approval to treat this illness (Ampligen) and they have not been approved . ( I was in a study 25 years ago for it and they are still trying)
No big Pharma wants to touch this illness.
If only they would throw some money into it, but they won't.

Maybe you view things differently in the UK. Here there is no one wanting to put money into medication for this illness. sad. And no one would be forced to take anything if they did.

Please also note the the report goes into much more detail about the specifics of this disease. The name is only the surface. ( and the criteria for that matter ) Real scientists and drug companies that would have to spend $$$ to make any, will look beyond the name.