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Discussion of full IOM report

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
On page 102 it mentions a large size impairment for complex information processing speed...

Slowed information processing speed is consistent with the prolonged latency and reduced amplitude in response to stimuli that the large Japanese study I mentioned found but that study also identified an equally sized sub-group that had reduced latency (faster reaction time) and increased amplitude (magnitude of response).

All of which is somewhat off topic but interesting to bear in mind.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Slowed information processing speed is consistent with the prolonged latency and reduced amplitude in response to stimuli that the large Japanese study I mentioned found but that study also identified an equally sized sub-group that had reduced latency (faster reaction time) and increased amplitude (magnitude of response).

All of which is somewhat off topic but interesting to bear in mind.

Personally I find that my cognitive abilities vary from day to day and within the course of a day. For example - trying to do my accounts today I managed little more than 20 minutes simple arithmetic before I couldn't do any more - my brain packed up. Some days I can't do any at all, sometimes just 5 minutes, and sometimes maybe an hour or even more.

A few hours earlier I was able to do short letters and numbers games in fast times.
 

SOC

Senior Member
Messages
7,849
Personally I find that my cognitive abilities vary from day to day and within the course of a day. For example - trying to do my accounts today I managed little more than 20 minutes simple arithmetic before I couldn't do any more - my brain packed up. Some days I can't do any at all, sometimes just 5 minutes, and sometimes maybe an hour or even more.

A few hours earlier I was able to do short letters and numbers games in fast times.
It's probably all about how much energy is available to us at any given time. If we used a lot of energy for other things, we can't process mentally. Other days, with less demand or more energy (for whatever reason), we do better. This is why it's critical to do cognitive testing under more controlled conditions, including (unfortunately) after exertion.

It just plain sucks that we have to do destructive testing to get the research information we need.
 
Messages
3,263
think studies doing neurocognitive testing on CFS patients tend to use an inappropriate design. In order to demonstrate deficits I think you'd need to do one or more of the following:

- exercise the patients the day before cognitive testing

- induce cognitive PEM with a neuropsych battery on day one followed by repeat testing on day two (although there would be a problem of practice effects if you used the same tests even if with different versions on both days, so day 1 should be something fatiguing but different than the real tests you're interested in doing on day 2)

- subject the patients to an orthostatic challenge while they are doing the cognitive tests

@Woolie might have some thoughts on this

I just had a look at the paper. The P300 is useful because it can pick up on subtle cognitive abnormalities even when test performance looks ok (e.g., footballers with recent concussion). In this version, you show people a series of figures and they have to respond "yes" each time the figure matches a certain category - for example, its a circle. Then you include an occasional "oddball" stimulus that's different from most of the others - for example, it might be red when all the others are blue. The P300 is an electrical response to the oddball. You can vary whether the oddball is a target (e.g., a red circle) or a non-target (a red cross).

These authors found, on average, that in kids with CFS, the P300 actually occurred slightly more rapidly than in control kids. However, they also showed a more marked P300 response to non-target oddballs (which is not good,it shows a lack of appropriate filtering).

They then tried to identify subgroups of kids that were: a) abnormally slow to respond to targets or; b) showed abnormally strong responses to nontargets. They suggest the first group might have learning difficulties and the second group might have a phobic disorder. Trouble is, these subgroups didn't look any different to one another on any other measures e.g., performance on a continuous divided attention task, or electrocardiogram measures.

The strongest results in the study seem to be the ones for the non-ERP measures - the CFS kids were significantly impaired on the continuous performance task (kana pick-out) and showed electrocardiographic abnormalities.

PS This is the paper I'm talking about:

Akemi Tomoda, Kei Miyuno, Nobuki Murayama, Takaka Joudoi, Tomohiko Igasaki.
Event-related potentials in Japanese childhood chronic fatigue syndrome
http://iospress.metapress.com/content/w14pg23t125337q8/
 
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Messages
3,263
@Sidereal, I guess you're asking more about how we could design a better study to measure cognitive deficits in MECFS? That's tricky because we don't know the time course in each person or the exact amount of exertion that would cause a deficit.

I would think the most reliable way to bring on cognitive symptoms would be through some sort of physical stress e.g., exercise. Then you could add some cognitive measures to your usual physiological ones when you test people after the stress (perhaps the next day?). Obviously, you'd measure cognitive performance before physical, so as not to confound your results with the immediate effects of just having exercised.

I think its very important to show that the cognitive features are exacerbated by exertion. Otherwise any cognitive problem (including anything showing up on ERP or fMRI) also be explained away as a consequence of psychiatric disturbance. We know, for example, that people with major depression and anxiety can show abnormalities on cognitive tests and also on ERP/fMRI measures.
 
Messages
3,263
If you're interested I posted an analysis of the paper some time ago which adds some context to the results :

http://www.cortjohnson.org/blog/201...deficits-present-in-chronic-fatigue-syndrome/

You did a great job @Marco, at making the whole thing clear - much better than my effort! Anyone trying to get their head around this Japanese ERP study should read Marco's summary at the link above instead.

I like your ideas about how the different ERP subtypes might reflect different points on a continuum, and you could well be right. But overall, you're way more favourable about the study than me. I just can't get around the fact that the subtypes didn't cross validate against any other measure, so hard to be sure they're not just noise variability.
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
@Woolie

Thanks. Glad you liked it.

You could have a point about the ERP results not correlating with the other measures (unless you accept my 'severity' explanation) and 'sensory gating' does vary as an individual difference but ERP measures do seem to reliably discriminate groups with various conditions from controls.

Plus we do seem to be increasingly talking about 'ME/CFS' as likely comprising more than one and possibly many diseases all leading to the symptom complex which results in the diagnosis. So it maybe we shouldn't expect to see a straightforward correlation between a particular measure and symptoms?
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I havn't read the complete report...........but I was wondering if the issue of suicide was mentioned anywhere?
 
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eafw

Senior Member
Messages
936
Location
UK
I havn't read the complete report...........but I was wondering if the issue of suicide was mentioned anywhere?

Page 2 and 16 of the report they say:

"Literature on mortality associated with ME/CFS is sparse. One study
found that cancer, heart disease, and suicide are the most common causes
of death among those diagnosed with ME/CFS, and people with ME/CFS
die from these causes at younger ages than others in the general popula-
tion. However, the authors note that these results cannot be generalized to
the overall population of ME/CFS patients because of the methodological
limitations of the study (Jason et al., 2006a)."
 

mango

Senior Member
Messages
905
there's something i'm really struggling to understand right now, and i'd appreciate it if someone could help clear up the confusion.

not long ago it seemed to me like "everybody" was pushing for PEM to be the focus as well as a required criteria; arguing that it's the one thing that's unique to PWME, and would help solve the problem with ME getting confused with general chronic fatigue, depression, deconditioning, mental health issues etc.

then suddenly the winds seemed to somehow change, and the impression i'm getting at the moment is that lots of people are now arguing that PEM isn't unique enough/at all (??), and therefore the suggested criteria are useless.

what happened? what am i missing?

i can see how it would be a massive problem if PEM/PENE would be misinterpreted as just DOMS/sore muscles or something along those lines. but to my mind that's not how PEM is described in the report, and we haven't even seen the clinicians' guide yet.

i can also see how having no exclusion criteria could be a huge problem, especially when lazy/ignorant/nonchalant doctors are involved... and if overly broad clinical criteria would be used in research.

also, i do understand why lots of people are unhappy with the new name that has been suggested.

i get all that. however, what i can't see is why this would be a reason to bin the whole report? i'd like to understand why so many are so convinced that this is so bad that it's not even worth putting to the test (study, if not in the real world) or giving it the benefit of a doubt and see it as a starting point to keep improving on... why the bits of the report that aren't so good are seen as so bad that it's worth throwing away all the excellent and really good bits as well, just to get rid of them? and why would so many people rather keep fukuda etc (i'm assuming that's the alternative for now, that CCC and ICC are not a realistic option at this time)?

i haven't managed to read the whole report yet, but so far i haven't found anything that i would see as massive deal-breakers that would explain this. what am i missing?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
not long ago it seemed to me like "everybody" was pushing for PEM to be the focus as well as a required criteria; arguing that it's the one thing that's unique to PWME, and would help solve the problem with ME getting confused with general chronic fatigue, depression, deconditioning, mental health issues etc.

then suddenly the winds seemed to somehow change, and the impression i'm getting at the moment is that lots of people are now arguing that PEM isn't unique enough/at all (??), and therefore the suggested criteria are useless.

what happened? what am i missing?
Good question. I feel exactly the same. "What happened?" "What am I missing?" I'm equally baffled. We've spent hour upon hour discussing these issues on the forum, and I thought there was a consensus on the forum, but suddenly the goal posts appear to have been moved and I honestly have absolutely no idea why.

I think there must be a drastic failure of advocacy if we don't even understand what the issues are. How on earth are the government agencies going to understand the issues if we don't?

(I've looked through the comments in the "no thank you" card to try to gain agreater understanding, but I'm still none the wiser. I can't work out why people are saying 'no', or what they're saying 'no' to exactly.)
 
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snowathlete

Senior Member
Messages
5,374
Location
UK
there's something i'm really struggling to understand right now, and i'd appreciate it if someone could help clear up the confusion.

not long ago it seemed to me like "everybody" was pushing for PEM to be the focus as well as a required criteria; arguing that it's the one thing that's unique to PWME, and would help solve the problem with ME getting confused with general chronic fatigue, depression, deconditioning, mental health issues etc.

then suddenly the winds seemed to somehow change, and the impression i'm getting at the moment is that lots of people are now arguing that PEM isn't unique enough/at all (??), and therefore the suggested criteria are useless.

what happened? what am i missing?

i can see how it would be a massive problem if PEM/PENE would be misinterpreted as just DOMS/sore muscles or something along those lines. but to my mind that's not how PEM is described in the report, and we haven't even seen the clinicians' guide yet.

i can also see how having no exclusion criteria could be a huge problem, especially when lazy/ignorant/nonchalant doctors are involved... and if overly broad clinical criteria would be used in research.

also, i do understand why lots of people are unhappy with the new name that has been suggested.

i get all that. however, what i can't see is why this would be a reason to bin the whole report? i'd like to understand why so many are so convinced that this is so bad that it's not even worth putting to the test (study, if not in the real world) or giving it the benefit of a doubt and see it as a starting point to keep improving on... why the bits of the report that aren't so good are seen as so bad that it's worth throwing away all the excellent and really good bits as well, just to get rid of them? and why would so many people rather keep fukuda etc (i'm assuming that's the alternative for now, that CCC and ICC are not a realistic option at this time)?

i haven't managed to read the whole report yet, but so far i haven't found anything that i would see as massive deal-breakers that would explain this. what am i missing?

I don't think you are missing anything. I don't think there are huge numbers that are convinced that this is so bad. It is just a vocal minority making a lot of noise. Most people are able to see that the report has many wins for us and that it could be a real gamechanger.

In the group of people who are vocally negative about the report, not many are able to articulate much of a logical reason why they think it's bad, and even those who can articulate some specific points, those points would be considered by most to be valid but not all encompassing. Sure we shoud tackle weaknesses in the report, but to believe the report is bad because of a handful of relatively small weaknesses while ignoring the many positives is just folly.

I think the majority of people in the ME/CFS/SEID community recognise all that but just don't feel the need to shout about it. I'm very happy with the report overall and feel it is a continuation of an slow but steady improvement in our little world over the last couple of years.
 
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Nielk

Senior Member
Messages
6,970
I don't think you are missing anything. I don't think there are huge numbers that are convinced that this is so bad. It is just a vocal minority making a lot of noise. Most people are able to see that the report has many wins for us and that it could be a real gamechanger.

In the group of people who are vocally negative about the report, not many are able to articulate much of a logical reason why they think it's bad, and even those who can articulate some specific points, those points would be considered by most to be valid but not all encompassing. Sure we shoud tackle weaknesses in the report, but to believe the report is bad because of a handful of relatively small weaknesses while ignoring the many positives is just folly.

I think the majority of people in the ME/CFS/SEIN community recognise all that but just don't feel the need to shout about it. I'm very happy with the report overall and feel it is a continuation of an slow but steady improvement in our little world over the last couple of years.

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.
 

Nielk

Senior Member
Messages
6,970
In addition, I have to add that this group of opposition is very large. It comprise many king time advocates, doctors, lawyers, scientists, nurses and others.

You don't see them posting here because they don't feel comfortable/accepted here.
 
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Messages
1,446
.
I strongly agree with @Nielk's last two posts.
.
Especially these statements:

@Nielk wrote: "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."


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


The objective of enabling all and any doctors to diagnose SEID is a stumbling block. That factor requires a simplified criteria. The complaint that the CCC/ICC is too complicated simply does not stand up. I do think its a case of double standards. Such truncated simplification of criteria is just not applied to other serious complex diseases. As I have stated previously, GPs are not expected to diagnose MS, MND, Parkinsons (for example). Such diseases are diagnosed by specialists.
.
The objective should be more accurate diagnoses, and to reduce misdiagnoses, not to increase the number of diagnoses by reducing the range of symptoms required. In addition, very disabling symptoms that are not on the SEID list will likely tend to be ignored or underplayed by doctors who have no other background in this disease than the IOM criteria.

.
 
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CBS

Senior Member
Messages
1,522
I have to say, in 21 years It has never once crossed my mind to describe my sleep as "unrefreshing." I have major sleep cycle dysruption and sleep initiation issues but when I get sleep it is wonderful (I don't wake feeling well but I feel much better in the mornngs than I do as the day progresses), I also had no significant IO issues until roughly year 14. Again, not once would I have thought to describe myself as having IO. And yet, Drs. Bateman (who I did not meet until I had been sick 16 years) and Montoya (who was the first to diagnose me with "CFS" in 1994) readily describe me as having severe to profound ME/CFS. Wonder how I would have faired with the new criteria and if any treatments discovered under it's name and Dx criteria would have been offer until I had already been sick for 14 years.
 

CBS

Senior Member
Messages
1,522
On the other hand, I clearly met the CCC Dx criteria:
Fatigue
PEM
Sleep DYSFUNCTION
Pain
Neurological AND Cognitve
Autonomic AND
Neuroendocrine AND
Immune.

All easily recognizable in the first several months and all persistent at some level since then.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
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
 
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@snowathlete wrote:
"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
"


What an utterly insulting, patronising thing to say! Infantilising and insulting those who are critical of the SEID name and criteria is a bizarre and unworthy approach. Portraying as irrational the people who favour retaining ME, is beyond the pale.

I am amazed how quickly and easily some have given up on the more rigorous criteria of CCC/ICC.

PEM plus three symptoms just won't cut it.
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