What common goals can everyone work towards, regardless of their view of the IOM report?'

[oceiv]

Note: This conversation has been split off from a previous thread. So as not to make this post longer, I've put my intro in another post.

I'll come out to represent the 3 undecideds. I think there are valid points on all sides. I also think there is much on which we agree (see below). I read this today on ProHealth. It may help put our discussions in a positive perspective.

Lucinda Bateman on why there is so little research about ME/CFS:

Regardless of the frustrating problems so far, I predict that the research environment will change fairly quickly over the next few years due to intense discussion of case definitions, promising new biomarkers, the voices of public advocates and efforts by federal institutions to change old stereotypes.

Although we are all frustrated by the disagreements. This intense discussion over case definitions may in fact, be helping. Our discussions will be echoed in research labs.

I don't have enough information to judge the IOM report yet. There are many questions yet to be answered about the report. If a relevant IOM committee member and a relevant government official can answer our questions in a sufficient way, then I may lean one way or the other. I would like to support the IOM report, if supporters also campaign to either change or clarify the report during its adoption process. We don't know if an amended report is possible. So far, the "anti-IOM report side" (too much of a simplification, but for illustration's sake) is voicing my concerns. But, I don't want to wholly dismiss the report. However, I'm scared what will happen if my concerns don't get heard and the report is adopted as is. Especially since this report was sponsored by SSA, which could affect people's disability status. Will government-funded research studies continue to include CCC-defined patients? If the "pro-IOM report side" (again simplification) would include my and others' concerns, then it would be easier for me to support accepting the report.

For me, the new name and criteria don't describe my illness well. The SEID criteria are like looking at my illness through a crack in the door. Only describes part of it. The CCC does describe my illness very well. The IOM report does not reflect the severity of my illness. If the report had noted that they didn't have enough info to include many severe patients, that their criteria is lacking in that respect. If it had also suggested specific action to correct this oversight, then it would be a bit more acceptable. Several years after I got sick, I was blessed by extreme luck. The luck pointed me to ME as my illness. I read the CCC and knew this was what I had. I sought out an out-of-state doctor to get a diagnosis. My local doctors continued to test me endlessly and to the point of exhaustion. They did not believe CFS could cause the severity and variety of symptoms I had. I feel that the same thing would happen with the new SEID criteria. Edit: See the post below for clarifications on how I don't think I wouldve gotten diagnosed with SEID criteria and how I want to save other patients from going through what I did. The last thing I want though, is to argue back and forth about it - too exhausted. If the "pro" side included my above concern and my other concerns in its campaign, I could potentially move my position.


We all seem to agree that:

• More funding for good research is needed

• We need to take advantage of the publicity surrounding the IOM report to push for increased research funding

• I think we all agree that severe patients need to be more included in research. That we should push for this to happen

• There are disagreements about this report and it has been divisive

• Many patients are scared that if their desired outcome about the report doesn't happen, it will have dire effect.

• There are both good and bad parts of the report

Many of us agree that:

• We can work together, despite differences

• There are valid points and concerns on all all sides

If we can come together, recognize all sides' concerns even if we disagree, then work towards common goals, despite our differences, this could be the start of new momentum for our disease. I agree with much of @alex3619 in post #5 of the previous thread. I also agree with much of @Bob 's post in a different thread. And yet we have different conclusions. That's fine with me, if we all agree to respectfully work together on our common goals.


Thanks for reading, if you got this far.

 

[alex3619]

We all seem to agree that:

• More funding for good research is needed

• We need to take advantage of the publicity surrounding the IOM report to push for increased research funding

• I think we all agree that severe patients need to be more included in research. That we should push for this to happen

• There are disagreements about this report and it has been divisive

• Many patients are scared that if their desired outcome about the report doesn't happen, it will have dire effect.

• There are both good and bad parts of the report

That appears to be the case.

• We can work together, despite differences

• There are valid points and concerns on all all sides

I would personally agree with that.

Will research studies continue to include CCC-defined patients?

That is up to researchers, not government. It may however affect grant applications. However we are in a research climate in which world leading researchers are being denied grants already.

For me, the new name and criteria don't describe my illness well. The SEID criteria are like looking at my illness through a crack in the door. Only describes part of it.

This is exactly what a diagnostic definition is supposed to do. However, while exclusionary conditions are not necessary, a recommended test list and a list of additional non-diagnostic symptoms that may be present, in the definition, would have been nice.

A diagnostic definition is about diagnosing the disease. Its not a complete disease dexcription. Any symptom which does not reliably assist with that shouldn't be there. Any symptom which is absolutely necessary should be there. The report discusses other symptoms, but they should have listed them in the definition itself, and not made them diagnostic.

ME (not yet SEID) requires testing protocols that most doctors do not routinely do, and many tests that many doctors will be unaware of. This should have been exhaustively discussed in the doctors guide. I may have to go back and reread the guide, its been a while. Lots of these issues do not have to be in the main definition, but its remiss if they are not covered in the doctors guide.

PS The IACFSME primer, for example, does discuss testing issues in some depth.

 

[oceiv]

@alex3619 Great that we're on the same page. Hope our common goals continue to get focus, gain consensus and hopefully one strong advocacy voice. What do others here see as our common goals? How do you and others think that we can move common goals forward?

You pointed out two things I need to clarify:

This is exactly what a diagnostic definition is supposed to do. However, while exclusionary conditions are not necessary, a recommended test list and a list of additional non-diagnostic symptoms that may be present, in the definition, would have been nice.

A diagnostic definition is about diagnosing the disease. Its not a complete disease dexcription. Any symptom which does not reliably assist with that shouldn't be there. Any symptom which is absolutely necessary should be there. The report discusses other symptoms, but they should have listed them in the definition itself, and not made them diagnostic.

I don't think I would have been diagnosed with the SEID criteria alone, if a local doc had known only these symptoms. I also would not have recognized this as my illness if I read only the SEID criteria and wouldn't have sought out an ME/CFS expert in another state. That's a scary scenario. The reason I sought out the expert was that I recognized my illness in the CCC. Pragmatically, patients often search for an explanation for their mysterious symptoms and then seek appropriate medical help. This is why there are public service campaigns for heart attack symptoms in women, for example. The patient always sees the symptoms first. At the end of the IOM report (page 321), the IOM recommends a dissemination strategy and a public campaign to educate doctors.

I fit the SEID criteria now, but the SEID criteria's symptoms were much less obvious at the beginning of my illness. Other symptoms were more prominent and somewhat obscuring the sleep issues and exhaustion symptoms. Extremely severe pain was my most noticeable symptom. I wasn't sleeping at all because of my pain. There would have been no way to tell if I had unrefreshing sleep. All doctors and myself attributed the inability to sleep to my severe pain. It was why doctors here took me seriously. They are required to by law wrt pain that severe. My local doctors still would have tested me endlessly. I don't want I went through to happen to other patients. The testing was invasive, painful, exhausting and often caused extreme decline in my illness. Once I got treatment for ME/CFS, my pain levels came down and my unrelenting exhaustion was obvious. Once I got sleep and pain medication, my sleep issues became obvious. I could finally sleep, but it wasn't refreshing sleep. Dozens of docs told me I was exhausted because of the pain. I kept insisting I was in pain because I was exhausted. I turned out to be right. Unfortunately, once my problem was exhaustion, docs didn't want to treat it. They only treated my other symptoms. like the lowered, but still-existing pain. This problem could be easily-fixed, by 1) including a note in the diagnostic criteria (page 210 and IOM Clinician's Guide) that some patients may have pain, immune, neurological, neuroendocrine symptoms. That although these symptoms aren't required for diagnosis, doctors shouldn't be endlessly trying to find a different diagnosis if these symptoms are present 2) A change on the diagnostic flowchart (page 212) that reflects the reality that even if some patients don't have unrefreshing sleep, the lack of this one symptom doesn't preclude an ME/CFS/SEID diagnosis. Right now, according to the IOM flow chart (page 212) , it does. The wording now is unclear and may cause all those patients without unrefreshing sleep to be missed. I've read this concern repeatedly on many different sites.

That is up to researchers, not government. It may however affect grant applications. However we are in a research climate in which world leading researchers are being denied grants already.
.

You're correct. I was referring to government-funded research. In the U.S. for most illnesses, government-funded research comprises an overwhelming majority of any given illness' research funding. I will try to edit my original post accordingly on these two points. Thanks.

Like you've said before, the diagnostic criteria must be tested. If this instruction for research testing of the criteria was included at implementation, it might ease a lot of concerns.


Ok, I'm tuckered out, probably for a while. But I'll be reading. Back to common goals discussion....research funding....

 

[alex3619]

I fit the SEID criteria now, but the SEID criteria's symptoms were much less obvious at the beginning of my illness.

Ditto. Its a concern.

 

[alex3619]

This problem could be easily-fixed, by 1) including a note in the diagnostic criteria (page 210 and IOM Clinician's Guide) that some patients may have pain, immune, neurological, neuroendocrine symptoms. That although these symptoms aren't required for diagnosis, doctors shouldn't be endlessly trying to find a different diagnosis if these symptoms are present 2) A change on the diagnostic flowchart (page 212) that reflects the reality that even if some patients don't have unrefreshing sleep, the lack of this one symptom doesn't preclude an ME/CFS/SEID diagnosis. Right now, according to the IOM flow chart (page 212) , it does.

Actually you had unrefreshing sleep. It was more the case they were not paying attention to it due to other factors. This is an example of how medical education has failed or shown limitations. If the education campaign addressed this (and there is no guarantee it will) then things will be better than now.

The big issue is not the definition itself in my view but how doctors will interpret it in real cases. There has to be documentation and probably courses that address these kinds of issues, but they do not exist yet for the most part.

These limitations apply right now. ME? No, that's CFS. CFS? No. That's CF. CF? That's somatization or conversion disorder.

Medical education is huge factor, and up till now what we got that were officially promoted are things like the CDC toolkit, the NICE guidelines, Fukuda etc. There are some private efforts to address this (eg IACFSME) but they never had a good impact.

If the IOM report is accepted in its entirety, then we might get such education. If not, we probably will get nothing. However there is no guarantee any education campaign will occur, or will occur in a way that addresses any real issues. Even if SEID is accepted, and the report is accepted, and the report is broadly endorsed by patients, which are pretty much a hope not a certainty at this point, advocacy will still have to be alert to failures in the rollout of the recommendations.

Whether the IOM report is accepted or fails, the role of advocacy will not be over. Its only just beginning.

 

[Ember]

I fit the SEID criteria now, but the SEID criteria's symptoms were much less obvious at the beginning of my illness. Other symptoms were more prominent....

That's a significant concern in light of the SEID frequency/severity standard for postexertional malaise, unrefreshing sleep and cognitive impairment:

Frequency and severity of symptoms should be assessed. The diagnosis of systemic exertion intolerance disease (myalgic encephalomyelitis/chronic fatigue syndrome) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

My cognitive impairment level wouldn't have met the SEID standard prior to my becoming disabled.

 

[Kati]

i have spoken to a researcher recently and we casually talked about the new name. The researcher didn't feel that changing name right now was a good idea because when they want to look up information from papers, it can get quite confusing for them if there are several names for a single disease.

i thought it was an interesting point he was making from his perspective.

Me, I just want things to move forward pretty fast. Don't care about the name. Let's get research, biomarkers, testing, clinical trials, and real care to all patients. All patient should receive free and competent care.

 

[alex3619]

I just want things to move forward pretty fast. Don't care about the name. Let's get research, biomarkers, testing, clinical trials, and real care to all patients.

That has been my position for years. I like ME as a current name for a lot of reasons, but the name does not matter enough to be spending a lot of time on it. The quantity and quality of research, which definitions do influence, is another story. So is translating that to clinical practice, and having it adopted by enough doctors to begin addressing the huge community burden.

 

[joshualevy]

We all seem to agree that:

• We can work together, despite differences.

Although I think this is very important, I don't think that the ME/CFS community has actually done it.
Actually, this is one of the big differences that I see between the ME/CFS community and more successful patient advocacy communities (such as the American Heart Association, Parkinson's disease advocates, JDRF in the world of type-1 diabetes, and so on).

On an organizational level: most diseases have one (or a small number) of advocacy organizations, that almost everyone gets behind. This organization tends to do a lot of different things that everyone more or less agrees on. But in the world of ME/CFS, there seems to be many tiny groups, and much complaining by individuals about what those groups do. (Much more so than in other diseases.)

My perception, mostly from reading ME/CFS forums and blogs, is that if a person agrees with 18 or 19 things that an organization does, but disagrees with 1 or 2 things, that person will not support the organization, and is likely to complain loudly about the disagreements they have with the organization. But that leads to extreme fragmentation of organizations, and a lot of useless in-fighting. On the other hand, for other diseases, it's quite common for people to support an organization they mostly agree with, even in the face of one or two disagreements.

This "organization fragmentation" (no matter what the cause) is very destructive for several reasons. First, it leads to duplicated infrastructures/mailinglists/etc. Second, it leads to trouble working together even on things they agree on (because they are enraged by things they don't agree on). Third, it leads to delays, since new organizations need to be created for new projects (the people in the existing group don't agree on the response for the new project). Forth, it fragments responses to those rare things that people do agree on, which is particularly destructive in the political arena. And I suspect there are many more problems as well.

But as long as people insist on a very high level of uniformity of belief in organizations before they will support those organizations, this problem will continue in the ME/CFS world.

Joshua Levy

 

[Ecoclimber]

Although I think this is very important, I don't think that the ME/CFS community has actually done it.
Actually, this is one of the big differences that I see between the ME/CFS community and more successful patient advocacy communities (such as the American Heart Association, Parkinson's disease advocates, JDRF in the world of type-1 diabetes, and so on).
Joshua Levy

Hi Josh,
I tend to agree as it pertains to other organizations that you listed above. However, those organizations are advocating for medical diseases that the scientific community accepts as their legitmate root cause or eitology is biological.

One must understand the historical reality of this illness and the extreme prejudice by the scientific community for the last 35 years that condsidered this an illegitimate medical disease worthy of research. To overcome such irational prejudice required various and often debatable avenues of approach before the ME/CFS community could even focus or even align themselves behind a particular patient advocacy group.

 

[oceiv]

Thanks to whichever moderator split this thread. @Sushi @Kina or someone else I might be missing.

Since this thread was split, it didn't have an intro post. I'll come back later and add a better one if necessary, either in this comment or a later one. Also, some responses, if I'm up to it. What I'd like to ask in the meantime, is what do others see as our common community goals? I'm interested in gathering opinion and consensus on what these goals are. If possible, also ideas on how we can advocate for these common community goals (goals on which all sides can agree).

People may also state their positions on the IOM report, so that others can know where we're each coming from, but it isn't necessary, if members feel uncomfortable/stressed by doing so. This will perhaps allow us to respect everyone's positions, while at the same time also seeing that people of different opinions on the IOM report, can still have common goals. Rather than debating our differences, we can hopefully focus on our agreements.

To the people who have already replied and will reply, what do you see as our common goals and paths to implement them? @Kati @Ember @joshualevy @Ecoclimber

This thread is for respectful discussion and there has already been insightful , respectful discussion, thus far .

 

[Sushi]

Since this thread was split, it didn't have an intro post. I'll come back later and add a better one if necessary, either in this comment or a later one.

Or, you can edit what is now post # 1.

Sushi

 

[Aurator]

Although I think this is very important, I don't think that the ME/CFS community has actually done it.

I don't think it's really a mystery why cohesion has been lacking. The other diseases you cite are far better understood than ME/CFS and therefore leave far less room for the polarisation of opinion or even the holding of differing opinions on such things as diagnosis and treatment. Where knowledge is lacking, blind faith or dogma often rush in to fill the void, and sectarianism arises all too easily as a consequence.

I wish it wasn't this way with ME/CFS, but until knowledge supplants dogma, unanimity and concerted action will continue to be rather difficult to achieve, I suspect.

 

[Kati]

Thanks to whichever moderator split this thread. @Sushi @Kina or someone else I might be missing.

Since this thread was split, it didn't have an intro post. I'll come back later and add a better one if necessary, either in this comment or a later one. Also, some responses, if I'm up to it. What I'd like to ask in the meantime, is what do others see as our common community goals? I'm interested in gathering opinion and consensus on what these goals are. If possible, also ideas on how we can advocate for these common community goals (goals on which all sides can agree).

People may also state their positions on the IOM report, so that others can know where we're each coming from, but it isn't necessary, if members feel uncomfortable/stressed by doing so. This will perhaps allow us to respect everyone's positions, while at the same time also seeing that people of different opinions on the IOM report, can still have common goals. Rather than debating our differences, we can hopefully focus on our agreements.

To the people who have already replied and will reply, what do you see as our common goals and paths to implement them? @Kati @Ember @joshualevy @Ecoclimber

This thread is for respectful discussion and there has already been insightful , respectful discussion, thus far .

i said it before, and I will say it again:

1- We need research funding from our governments including urgent need for biomarkers which are easy of access
2- We need a medical specialty to be assigned (like Invest in ME said it so well, that will not be psychiatry)
3- Access to clinical trials for drugs optimally internationally.
4- Care and research for the very severe.
5- Education program for med students and continuing education for all physicians which does not include Fukuda or worse definition.


Can we all agree on that?

 

[Nielk]

i said it before, and I will say it again:

1- We need research funding from our governments including urgent need for biomarkers which are easy of access
2- We need a medical specialty to be assigned (like Invest in ME said it so well, that will not be psychiatry)
3- Access to clinical trials for drugs optimally internationally.
4- Care and research for the very severe.
5- Education program for med students and continuing education for all physicians which does not include Fukuda or worse definition.


Can we all agree on that?

I can agree on all of these but, only if they use the CCC or ICC criteria.

 

[alex3619]

My cognitive impairment level wouldn't have met the SEID standard prior to my becoming disabled.

I had mild ME for a long time. During this period I had a limited life but was able to complete a bachelors degree and win a university medal, and get first class honours. However this effort coincided, and probably caused, a severe decline which finally resulted, in conjunction with other issues like graded exercise, in a crash to disability levels.

What was apparent, very clear in fact, is I had great difficulty in mentally switching tasks, which made multitasking a huge problem.

The issue is not that there are not problems with cognition and activity. The issue is they may not be measurable, particularly by an average GP with average resources. Its also relative. An athlete with ME might appear to be able to function OK, and an academic with ME might appear to have OK cognitive function.

Discussion of the IOM report might be better elsewhere, there is lots to say. Maybe two threads, with links to each other, one on positive aspects of the report, and one on negative aspects of the report?

 

[Ember]

We all seem to agree that... There are disagreements about this report.... That's fine with me, if we all agree to respectfully work together on our common goals.

I'm interested in gathering opinion and consensus on what these goals are.

When we disagree, our priorities and strategies will likely differ. But despite these differences, our advocates aspire to a common goal—better patient care. MEAdvocacy.org recently reiterated its strategic goals in this blog.

 

[Ember]

An athlete with ME might appear to be able to function OK, and an academic with ME might appear to have OK cognitive function.

I wouldn't have been able to do my job during my early years with ME had I experienced cognitive impairment “at least half of the time with moderate, substantial, or severe intensity.” Had I not been encouraged to increase my exercise capacity during those years, I might never have experienced cognitive impairment to such a disabling degree. Unlike the ICC, the SEID criteria wouldn't have included me during those years, so neither would SEID have spared me the harm of my disability.

 

[oceiv]

@joshualevy You've given an observant and insighful assessment of the organizational situation in the ME/CFS community. I agree with @Ecoclimber and @Aurator about the reasons for the current situation. I don't know the complete history but IMO, this situation will likely continue. Another reason for what you described is intensity preference. The issues on which disagree may be few, but each of those issues is very important to us. Each org will react to IOM report in its own way. Patients will support or not support each org accordingly. Although it may be redundant, I feel that change will also happen from the bottom up. If we can agree on a number of goals, most orgs will hear us. Most ME/CFS orgs/sites have been polling their members/readers already. If we speak with one voice, even if on a narrower set of goals, our voices will be louder. @aimossy posted the link to a new grassroots movement. I didn't have success signing up, but will keep trying. Posting it here if others would like to support that effort.

@Ecoclimber and @Aurator The history and absolute desperation of patients who have faced it is important. Perhaps we here can come up with a way to voice our common goals despite the tough sitution we face. What do you think?

@Kati I strongly support all of those goals and will add them to the list.

@Nielk You and I share many of the same criticisms of the report. The Hornig/Lipkin study used two cohorts, nearly all fit the CCC (I tried to find the citations for the percentages, IIRC it was about 99%), but about 100% fit the Fukuda. If replicated, this study could be one of the most important in years. Especially because of its size. If future research used both the SEID and the CCC with at least 99%, would you support that research? If not what would you suggest as common goals on which most of us would agree?

@alex3619 The two threads sound like a good idea if they are done in a positive way. People of all opinions are welcome to state their opinions here. But you're right that further positive discussion may be needed. You make an important point about how do you test cognitive abilities.

@Ember Better patient care is going to be added to common goals. I think that most patients would ardently agree. Can you or others elaborate on this goal? Which of the MEAdvocay goals do you or others think would get broad agreement? Your voice is important in this discussion as is every patient's.

Thanks again, @Sushi I did add a short note

Great progress. It feels that we already got a good cross-section of the community.

 

[oceiv]

I'm posting a revised list of goals, including suggestions from above. Trying to see how many agree.


We all seem to agree that:

• We need more research funding from our governments, including urgent need for biomarkers which are easy of access

• We need to take advantage of the publicity surrounding the IOM report to push for increased research funding

• Severe patients need to be more included in research. We should push for this to happen.

• We need better patient care, including for severe (housebound and bedbound) patients

• We need a medical specialty to be assigned (like Invest in ME said it so well, that will not be psychiatry)

• Access to clinical trials for drugs, optimally internationally.

• Education programs are needed for med students and continuing education for all physicians, which does not include Fukuda or worse definition.

• There are disagreements about this report and it has been divisive

• Many patients are scared that if their desired outcome about the report doesn't happen, it will have dire effect.

• There are both good and bad parts of the report

Many of us agree that:

• We can work together, despite differences

• There are valid points and concerns on all all sides

• When we disagree, our priorities and strategies will likely differ. But despite these differences, our advocates can also aspire to common goals

Do a good number agree that @alex3619 's suggestion of testing this new SEID definition is important?