Please sign this NO THANK YOU card to IOM committee

[Valentijn]

Have you actually read the card, @snowathlete?

It doesn't look that bad. At least it isn't particularly abusive. Mostly it just shows an embarrassing level of ignorance regarding the report from the majority of commenters.

I can understand "I don't like the name", though it seems a bit nit-picky when ME and Ramsay's Disease were never really on the table. And I definitely understand "The CDC wasted $1M doing this when we have the CCC already", though that should be a message for HHS, not IOM.

But accusing the panel of somehow worsening the situation of ME/SEID patients, replacing "ME" with "SEID" (when there wasn't any ME in the US to start with), ignoring biomedical research, obstructing research, or minimizing the illness is just bizarre and completely disconnected from reality. I can only assume that few of the commenters actually read the report, and are just feeding of off each others' mentality of blind protest.

I don't think the card will be taken seriously at all when it contains so many basic factual errors which can easily be disproven by reading the report.

 

[Nielk]

It doesn't look that bad. At least it isn't particularly abusive. Mostly it just shows an embarrassing level of ignorance regarding the report from the majority of commenters.

I can understand "I don't like the name", though it seems a bit nit-picky when ME and Ramsay's disease were never really on the table. And I definitely understand "The CDC wasted $1M doing this when we have the CCC already", though that should be a message for HHS, not IOM.

But accusing the report of somehow worsening the situation of ME/SEID patients, ignoring biomedical research, obstructing research, or minimizing the illness is just bizarre and completely disconnected from reality. I can only assume that few of the commenters actually read the report, and are just feeding of off each others' mentality of blind protest.

I don't think the card will be taken seriously at all when it contains so many basic factual errors which can easily be disproven by reading the report.

I don't think that it is right to belittle and criticize people's comments who disagree with the IOM report.

Have you asked if every signer of the thank you card read the full report?

You can disagree with their opinions but, do not disparage them.

Whether this card will be read or not is really not your concern.

 

[Valentijn]

Have you asked if every signer of the thank you card read the full report?

It's obvious that they have not. There are complaints about the report not taking the disease seriously, as a biomedical disease. Yet they do, explicitly and repeatedly throughout the report. They specifically deny the BPS model in clear and forceful language. How can someone even skim the report and still voice that complaint with a straight face?

What the signers seem to also fail to realize in a great many comments is that this has never been "ME versus SEID". This is "CFS versus SEID". This has never been about replacing CCC or ICC ME/CFS, but rather it's all about replacing Fukuda CFS. I find it hard to believe that any patients are deliberately rejecting SEID in favor of Fukuda, and giving HHS any excuse to stay with Fukuda! So again, I think it's clear that they are not fully understanding the situation.

 

[Nielk]

It's obvious that they have not. There are complaints about the report not taking the disease seriously, as a biomedical disease. Yet they do, explicitly and repeatedly throughout the report. They specifically deny the BPS model in clear and forceful language. How can someone even skim the report and still voice that complaint with a straight face?

What the signers seem to also fail to realize in a great many comments is that this has never been "ME versus SEID". This is "CFS versus SEID". This has never been about replacing CCC or ICC ME/CFS, but rather it's all about replacing Fukuda CFS. I find it hard to believe that any patients are deliberately rejecting SEID in favor of Fukuda, and giving HHS any excuse to stay with Fukuda! So again, I think it's clear that they are not fully understanding the situation.

You did not answer my question: Did you ask if every one who signed the thank you card have read the full report?

In reply to your question - This was all about adopting the CCC. This is what we have asked for and this is what our experts asked for. The fact that HHS ignored us, does not mean that our standards have changed.

 

[Valentijn]

You did not answer my question: Did you ask if every one who signed the thank you card have read the full report?

Do I have to? It's obvious that most of them didn't, when they make comments which directly contradict the basic contents of the report.

In reply to your question - This was all about adopting the CCC. This is what we have asked for and this is what our experts asked for. The fact that HHS ignored us, does not mean that our standards have changed.

Okay ... so this isn't really about the IOM report, but rather about HHS ignoring patient, advocate, and expert advice to use CCC in the first place. Am I correct in assuming that this "card" is going to the HHS? Because many comments are addressing the IOM, and seem to be pressing for SEID to not be adopted ... which would mean that Fukuda stays for the foreseeable future.

What are the exact goals of the letter? Who is the intended audience? What is the desired outcome? How are you attaining that outcome? Do the statements in that card support the achievement of that outcome?

 

[Bob]

@Nielk, two brief questions, if you don't mind considering them. (I understand that you're feeling rather embattled, and that this might add to the pressure, but I think these are important issues for us to consider.)

1. Does it worry you that outright rejection/condemnation of the IOM report may leave us with Fukuda CFS (i.e. the status quo)?

2. The full report is very supportive of our cause, in my opinion, and e.g. recommends two-day CPET testing, and it highlights the Lights' research, and it includes brain-scan research that demonstrates brain abnormalities. It includes the sort of research that we asked them to include, and it defines SEID as a biomedical illness, with immunological and neurological abnormalities etc. Many comments in the card condemn the report as not representing our illness, but seeing as the report is a comprehensive review of the biomedical research, this suggests to me that some commentators haven't actually read the report, but are condemning it anyway. Do you think it's helpful to condemn the full report when it is so supportive? Do you think we are sending a confusing and counterproductive message by condemning a report that describes SEID so comprehensively and thoroughly as a biomedical illness and that includes all the research we asked them to? (Or perhaps you don't agree with the premise of my question that the report is a helpful review of the biomedical research literature?)

I can happily start a new thread for this post if anyone considers it to be off-topic.

 

[Nielk]

It's obvious that they have not. There are complaints about the report not taking the disease seriously, as a biomedical disease. Yet they do, explicitly and repeatedly throughout the report. They specifically deny the BPS model in clear and forceful language. How can someone even skim the report and still voice that complaint with a straight face?

I think that you are not reading my question: Have you asked the signers of the thank you card (not the NO thank you card) as well whether each signer read the full report in order to make a thank you statement?

 

[Nielk]

Okay ... so this isn't really about the IOM report, but rather about HHS ignoring patient, advocate, and expert advice to use CCC in the first place. Am I correct in assuming that this "card" is going to the HHS? Because many comments are addressing the IOM, and seem to be pressing for IOM to not be adopted ... which would mean that Fukuda stays for the foreseeable future.

This card is addressed to the IOM just like the thank you card is addressed to the IOM. I very much doubt that this card would have started if it was not for the creation, a day after the roll out of the IOM report, of the thank you card,

I did not create this NO thank you card, I did sign it though. The intent, I believe, is to show that we are not satisfied withe much of the results. We are not happy with the criteria or the name. This is the work of the IOM panel and therefore directed to them.

 

[Nielk]

@Nielk, two brief questions, if you don't mind considering them. (I understand that you're feeling rather embattled, and that this might add to the pressure, but I think these are important issues for us to consider.)

1. Does it worry you that outright rejection/condemnation of the IOM report may leave us with Fukuda CFS (i.e. the status quo)?

2. The full report is very supportive of our cause, in my opinion, and e.g. recommends two-day CPET testing, and it highlights the Lights' research, and it includes research that demonstrates brain abnormalities. It includes the sort of research that we asked them to include, and it defines SEID as a biomedical illness, with immunological and neurological abnormalities etc. Many comments in the card condemn the report as not representing our illness, suggesting that some commentators haven't actually read the report. Do you think it's helpful to condemn the full report when it is so supportive? Do you think we are sending a confusing and counterproductive message by condemning a report that describes SEID so comprehensively and thoroughly as a biomedical illness? (Or perhaps you don't agree with the premise of my question that the report is a helpful review of the biomedical research literature?)

I can happily start a new thread for this post if anyone considers it to be off-topic.

1. It worries me that the IOM criteria and SEID name will be used.

2. I agree that the full report is very supportive of our cause I think that it they show that they have really listened to us. They keep mentioning how they have read our 1,000 comments and the FDA report. They state that they understand how devastating our disease is and that it is real and biomedical.

But, when it comes to the action of creating the criteria and name, I do not agree with the, It does not reflect their words.

 

[Valentijn]

I think that you are not reading my question: Have you asked the signers of the thank you card (not the NO thank you card) as well whether each signer read the full report in order to make a thank you statement?

Do I need to? I haven't noticed any comments on it which disagree with reality.

 

[Valentijn]

This card is addressed to the IOM just like the thank you card is addressed to the IOM. I very much doubt that this card would have started if it was not for the creation, a day after the roll out of the IOM report, of the thank you card

So it's just a disagreement with the thank-you card. I suppose that explains the lack of constructive content or a coherent message.

I do appreciate the explanation. Though it would be nice if people found a way to disagree which doesn't contain so many inherent flaws, or endanger a modest amount of progress which might otherwise be made.

 

[Valentijn]

1. It worries me that the IOM criteria and SEID name will be used.

But what happens if the HHS happily says "Okay, forget about SEID and the new criteria." Do you think they'll immediately turn around and embrace the CCC after vehemently opposing it for so long?

I think it's most likely that they'd leave Fukuda in place and we'd have another 5-10 years with "Chronic Fatigue Syndrome". Yes, we want to get to CCC/ICC ME eventually, but isn't it more useful to use SEID as a stepping-stone toward that goal, instead of staying at the starting line with Fukuda indefinitely?

 

[Wildcat]

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Has the CCC/ICC really been forgotten so quickly by patients who have been calling for it to be adopted (CCC) for a decade??

The 50 Experts letter was an unprecedented step by our ME experts; all those years we wanted them to collectively get behind us, they did so with the 50 Experts letter in spectacular terms.


A mere few months later it seems the CCC/ICC have been all forgotten about in a rush to accept an inadequate criteria, and to accept what is emerging to be not only a weak name, but a truly awful name. We have never seen such an onslaught of comments accusing us of laziness before.

There are times to compromise but this is not one of them.

.

 

[Nielk]

But what happens if the HHS happily says "Okay, forget about SEID and the new criteria." Do you think they'll immediately turn around and embrace the CCC after vehemently opposing it for so long?

I think it's most likely that they'd leave Fukuda in place and we'd have another 5-10 years with "Chronic Fatigue Syndrome". Yes, we want to get to CCC/ICC ME, but isn't it more useful to use SEID as a stepping-stone toward that goal, instead of staying at the starting line with Fukuda indefinitely?

I think that we should take this discussion elsewhere as this is a thread for the NO thank you card.

 

[Wildcat]

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I am also very shocked at the portraying of people who disagree with the IOM criteria and name, and those who have signed the no thank you card, as ignorant and mindless.


.

 

[Wildcat]

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@Valentiyn

How sure are you that SEID and the IOM criteria will be a stepping stone? Do you expect us to wait and be hopeful and trusting? Really???
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How many years are we supposed to wait patiently? 5 years? 10 years?

 

[Valentijn]

I think that we should take this discussion elsewhere as this is a thread for the NO thank you card.

Actually it is on point - it directly involves the impact which the card could have.

 

[Valentijn]

How sure are you that SEID and the criteria will be a stepping stone? Do you expect us to wait and be hopeful and trusting? Really???

We can't be sure. We have to keep fighting for it, and we certainly should not be trusting HHS.

But I think that we get closer to that goal if we accept SEID in the short term. Rejecting SEID likely dooms us to further delay with continued Fukuda diagnosis and research in the US, which will be echoed by other countries as well.

 

[Nielk]

We can't be sure. We have to keep fighting for it, and we certainly should not be trusting HHS.

But I think that we get closer to that goal if we accept SEID in the short term. Rejecting SEID likely dooms us to further delay with continued Fukuda diagnosis and research in the US, which will be echoed by other countries as well.

As you have stated in other posts, this is a clinical criteria, not research.

 

[Bob]

1. It worries me that the IOM criteria and SEID name will be used.

2. I agree that the full report is very supportive of our cause I think that it they show that they have really listened to us. They keep mentioning how they have read our 1,000 comments and the FDA report. They state that they understand how devastating our disease is and that it is real and biomedical.

But, when it comes to the action of creating the criteria and name, I do not agree with the, It does not reflect their words.

Thanks for responding Nielk. I appreciate it.

1. I understand that you are not happy with the new criteria and name and that you don't want them to be adopted. I respect the fact that you are unhappy about them. But my question was not related to that. I was exploring another issue: would you be happy for the IOM recommendations to be rejected outright, and for the US govt agencies to decide to continue with the status quo? In other words, do you think there a danger that by rejecting the recommendations outright, that we will be left with Fukuda CFS. I know it's not a fair situation to be asking you about, but it's a reality that we may be facing. My concern is that if our arguments are not nuanced enough and we're not forming reasonable arguments against the recommendations, then our advocacy may be counterproductive. Perhaps we should be arguing against what we don't like and arguing in favour of what we do like? There is a lot in the report to argue in favour of.

2. So you think that the report is somewhat helpful, overall, but that the recommendations do not reflect the report. I think I might agree with that, to some degree, but I'm still forming my opinions. But many who have signed the card have condemned the report in its entirety for being unrepresentative of our illness. Do you not think that this might be sending confusing and counterproductive messages? The report recommends two-day CPET testing and highlights brain abnormalities and the Lights' research, so why are we condemning it? Do we really want to send the message that two-day CPET tests don't represent our illness? I guess what I'm asking for, from our community, is nuanced/reasoned arguments rather than blanket condemnation. I think that would help us to bridge differences. I hear what you are saying about the 'thank you' card being the same but opposite.