The reason why you don't see more posts about the problems/issues about the IOM criteria is that as soon as some of us try to explain, we get jumped on. I have tried to articulate but, I am not looking for a fight. I can barely mange my life as it is.
It is as if you all decided that the ones who oppose are BAD - just looking for trouble. Why can't we just all agree with everyone else that this is good for us and will lead to a positive change,
There is also the issue of what one considers a good strong criteria. I think that those who believe that the main objective is for everyone who is ill to be able to easily get diagnosed, the IOM criteria is for you. For those who believe the main problem is fatigue, the IOM is for you.
I do agree that the report itself is mainly good. It is extensive and scientifically based. I welcome the fact that there is no mention of a somatoform illness or any psych connotation. This is very good and it is what we have asked for.
At the end though, the report will only be read by the few. It is the criteria that matters and also the name.
I believe feel that our disease is a neuro immune disease with a viral/enterovirus component. There is scientific evidence for this. In addition, it is a very complex disease because it involves almost every system of the body. I do not believe that a GP can care for us properly.
I know that the charge to the panel was to create :simple" diagnostic criteria for GPs. We were against this process. The IOM decided to go through with it. In addition, all the panel members, including the expert ones chose to serve on the panel with the specific charge given. I have nothing personal against those panel members but, i do not agree with them serving on this panel which we were demonstrating against. You might say that they did it to ensure that the result would be good but, I disagree. It's like someone who crosses the picket line.
I believe that the criteria are way too simplistic, does not describe the true disease and therefore will be way too inclusive. The CCC which we have fought for demands more symptoms - some neurological, neuro endocrine and immune symptoms. I believe that those are needed in order to properly diagnose the RIGHT cohort.
About PEM - It is true that PEM is unique to ME/CFS. It is true that we have fought for it and when I read that PEM was included and mandatory I was very happy. But, when I saw that there are only 3 other symptoms needed and they could be attributed to so many problems like depression or insomnia, I panicked. The reason I panicked is because we do not yet have a reasonable way to objectively test for PEM that is safe for patients. So, it remains a subjective symptom. If diagnosing would be left to specialists who are especially trained to recognize true ME PEM, I would not be as worried, but, i have no faith that GPs who see patients for less than 6 minutes will be able to detect true PEM.
In addition, when I read that there are no exemptions of other similar diseases, i got scared. I know that many of you are very happy to be able to tell that this is not a diagnosis of exemption. it is a real disease. But, I am much more concerned about getting people diagnosed correctly than the way things sound.
You might argue why am I so concerned about inclusive diagnosis when this is just for clinical criteria, not research. I would argue that this is not necessarily the case because the intent might have been to be clinical but, many criteria start off as one and then gets used for both. Being that HHS didn't charge the P2P to create research criteria, the possibilities are high that this IOM criteria will be used for research criteria as well.
But, even if it is only used for clinical, could you imagine what it would be like if many other patients get diagnosis of SEID? I know how annoyed you get when a new member comes on here and tells tales of how positive thinking has cured them. They will write articles in magazines and newspapers describing SEID in a distorted way and the world will believe that this is the face of SEID.
We could have just adopted the CCC and not have all these problems. The CCC has been proven to work. It is a criteria that describes my disease. You might say that the CCC will be never adopted so get with the program and I will tell you that I have chosen the path of resistance. I remain steadfast and do not chose to give in.
As far as the name, it is interesting to note that Dr. Bateman was an author of the ICC. The ICC stated that they have officially adopted the name Myalgic Encephalomyelitis because scientific evidence has shown that this is the true disease. Now, four years later, Dr. Bateman with the rest of the IOM panel, states that ME can not be scientifically supported. I believe that there is scientific evidence and historical evidence to call this disease M.E.
The aim that we can all get behind is that we need funding for large scale research. I believe that this will be easier reached when this disease is diagnosed and named for the severe disease it really is.
As an aside, I find it interesting that the panel had scientific evidence to call this a disease as opposed to a syndrome.
The people who will read the report, although a minority in number, are going to be policy makers and can have a disproportiate effect, and that is no small thing. That has the potential to be frickin huge for this community. So I can't agree that the report doesn't matter in comparison to the name and criteria. All are important.
The name SEID is a massive upgrade on CFS. Apparently it should be called ME and there are people shouting about that, but they won't be reasoned with. This is what I try to tell them: It was impossible to call it ME because there is not enough evidence to back it up. I bet most people who are still adamant that it should be ME have not actually looked themselves at what evidence there is for it. Anyone who looks, as I have, at the evidence properly can only conclude as the IOM did, that there isnt enough proof to give the name to the disease. Go look, or I'll even go through it openly with you and try to get you to see why they said that.
In that situation, where you can't call it ME, you want to do away with CFS but you have to come up with something evidence based, and specific to the disease. What are your options?
You can't call it ME as already shown. You can't call it neuroimmune disease or somesch because that label could apply to twenty diseases out there, so what are your options?
People who recognise that those were the circumstances here, don't seem to be able to suggest anything better. I want the name to focus on the immune system for instance, I think it is core to the pathology, but despite several studies finding immune abnormalities, the findings are conflicting, unclear, and small. There simply isn't enough evidence to give it a name based on those studies. I look forward to the day we have better studies and can do so with accuracy if the studies show the sorts of things I think they will. But I can't reasonably complain that the name should be called NK-cell dysfunction disease at this stage, and neither can the IOM. The name would get laughed out of every medical establishment in the world because there is not enough evidence to give it credibility. That's why they never took the ME label seriously in the first place - and I'm in the UK where it has been, and is still used, and I can tell you it has done nothing for us. Absolutely nothing, because the doctors know there isnt much evidence for inflammation in the brain or spinal cord.
The criteria are based mainly on PEM which is what we all cried out for. We all wanted that. We got it. We should be over the moon about that. It also requires either cognitive impairement or POTS. Again, massive wins for us.
Whereas most clinicians doing diagnosing won't read the report they are going to get a document tailored specfically for them by the IOM. Why not wait for that before deciding the diagnositic criteria won't work? By all means raise concerns now that you think it is key to ensure PEM is diagnosed correctly. Thats the sort of thing we need to do.
You say yourself above that PEM is unique to our disease but then complain that other symptoms in the criteria can be attributed to other conditions. If both are true then as PEM is mandatory, as the defining symptom of the disease then what does it matter? Specialists are no more likely to get diagnosing PEM right than a GP, the only difference would be that the specialist would resent doing it.
This view that loads of people are going to get diagnosed with SEID who dont have it, is just nonesense to me. At the moment we have people being diagnosed by FUKUDA for crying out loud. Do you really believe that the IOM criteria are as weak as FUKUDA? It's a massive upgrade again and will exclude plenty of people who currently have a CFS diagnoses but have depression and stuff like that because they don't have PEM. Terrific step forward right there. For everybody.
I agree with you that a GP cant care for us properly, but be realistic here: Which specialism is going to take us on in our current form? Neurology would be the most likely to land us based on evidence but imagine what would happen if the IOM suggested that! We'd have top tier Neurology groups publicly rejecting us and refusing all over the world because they don't want to inherit millions of patients over night who are really sick but that they cant do a thing for. It would be a blood bath for us and put us back another decade.
Are the criteria too broad in allowing comorbid diseases? Possibly, you can argue that, and maybe it's something enough of the community should act on, but to throw the baby out with the bath water given all the positives is just baffling to most people.
Yes I could see these criteria being used in the future for research too but so what? People doing the research are specialists, most will be the same ones we have already who are experienced ME/CFS researchers, which is what you said you wanted to ensure they diagnose PEM correctly. So we'd have patients being researched who definitely had PEM. What's not to like there? Maybe there is something I haven't thought of but the community can tackle issues like that, while still embracing the IOM report. There is no need to try and bury it because of relatively small issues. We need progress and this is it right here. I find it very hard to believe anyone thinks that there will ever be a perfect report, so people need to get realistic about things because a lot of us recognise that in our current situation this report is excellent.
You think people shoudln't have served on the panel. Ok, fine. But they did, and we can't keep going over old ground. Where does that get us? If they hadnt served then someone else would have and the report could have been absolutely awful with the name CFS staying put, the disease labelled again as pyschosomatic etc. Regardless though, the point is that that did not happen, these people served, one of them has a kid so sick with this disease that someone who knows him told me he was one of the most sick patients he has ever seen. Bateman is an established member of our community and even co-authored the ICC as you pointed out. Why stand against people who are clearly on our side?
All I'm going to say in response to "we could ahve just adopted the CCC" is that it didnt happen. Patients need to get over it, your right, that is what I'm going to say. For your own sake as much as anyone else's, or else you'll still be steadfastly resisting in twenty years time. What good does that do? You have to know when a battle has been lost so that you can go and take part in the next battle and experience on side, try and win it. It may seem noble to stick to your guns, but it's just you on the battlefield, the other side has gone home. You're a capable advocate, don't waste yourself on this Nielk. Please. We all gave it our best try with a very worthy effort getting researchers and advocates all onboard, but they said no and decided to create something new. I could talk about some of the benefits of that, but I won't because it's also pointless. What matters is that it happened. You don't spend $1M get loads of media attention and then do a U-turn.
I'm going to be campaigning for research dollars once I have the energy again. I hope you'll shift more of your focus to that as well in time.
Best
Joel
