• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@Kati I hope you reconsider. Getting patient care, for me, right now is even being able to get a doctor to see. Any doctor, not even an ME/CFS doctor. It is legal for doctors here in the U.S., GPs, cardiologists, rheumatologists to refuse any treatment at all because a patient has CFS. That is, I can't get treatment from any docs right now (not ME/CFS docs) for my co-morbid conditions or even get a check-up from a GP, because docs are allowed to refuse me treatment on a problem unrelated to ME/CFS, just because I have ME/CFS. Asking for docs not to refuse treatment is patient-care. If you and others can see any doctors, for OI, for a check-up, for something that flares up, consider yourself very lucky.

oceiv. I do understand where you are coming from with this, it is the same here in Australia with doctors refusing to see or treat you if they don't want too. I was turned away from so many doctors who told me that they did not want me as a patient (the worst the ME, the more doctors do not want anything to do with you).

I saw OVER 30 different doctors (over many many years) and NONE of them would even try to treat common ME/CFS symptoms (my sleep issues etc were all left even thought at times I was going 3 whole days and nights without sleep till I was hallucinating). My last two doctors which took me on ONLY did it cause I had a ME/CFS specialist involved by then recently thought, I'm back to no doctors again as my doctor moved and I ended up in hospital again going that far to see her. Most of my ME/CFS conditions, some treatable ones, go untreated.

With all this being said I have though also experienced that "bad doctors" or ME/CFS nieve health professionals, these are often worst then having NO doctor. There are huge factors involved in getting patient care for ME/CFS patients. There are steps which need to take place first before that can probably happen eg maybe we should be demanding better doctor education on ME/CFS and for our condition to not be being left out of most the medical text books (thing is I'd worry that they also would put GET and CBT in it as the top two treatments and that then may influence doctors for a long time).

How do you propose that better patient treatment is done? Is that something whoever gets the petition calling for better patient treatment is going to understand?

(maybe there needs to be a separate thread for each common goal to be discussed)

Maybe calling for a better support system in place for severe disabled ME people would be a more successful thing then calling for better medical care?? (Ive not a clue as I don't know how the American disability system works)
......

I like the asking for an apology idea but the thing is while GET and CBT are still being recommended as top treatments by the other report, I doubt we could ever get one at this point of time.
 

oceiv

Senior Member
Messages
259
@Sasha I had asked for everyone to list their must-have goals. @Kati did, you did, I did. I thought it would be important for people to see others' must-haves and deal-breakers are. I like @aimossy 's approach also, which was a version of this approach. I think there is some more specific version of the patient-care goal (my deal-breaker) that can be acceptable to be many of us.

Thank you so much for your now several, supportive comments on my situation. This means a lot!

@taniaaust1 I had also been thinking that as patients, we need to be speaking out on our issues. For example, what is happening to you or to me is so complicated, only each of us knows our own situation and challenges. Goodnight, all.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If we tie it all into research, we can give it more focus. I am not suggesting this is what we want for wording, but its a place to start debating it. It will certainly need more supporting material for a start, and I have not written even one specific action down.

There are extensive and unmet needs for huge numbers of patients with ME/CFS which is a disease that has long been neglected in terms of adequate research. We need funding on par with other comparable diseases. We need patients to be seen as stakeholders in research and decisions affecting them. We need severe patients to be included in research cohorts. We need effective dissemination to a diverse medical community. We need urgent validation studies on the new SEID criteria so the medium and long term impact might be assessed should it be adopted.

To that end we have # specific requirements:

1. XXXXXXXXXXX
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
@Sasha I had asked for everyone to list their must-have goals. @Kati did, you did, I did. I thought it would be important for people to see others' must-haves and deal-breakers are. I like @aimossy 's approach also, which was a version of this approach. I think there is some more specific version of the patient-care goal (my deal-breaker) that can be acceptable to be many of us.

In terms of must-have goals, mine would be research funding, because everything else stems from that.

I'd also like to add in Solve's demand for ME/CFS research issues to move out of Women's Health and into NAIAD or NAIDS. That seems to be crucial to progress.

However, a deal-breaker for me would be the inclusion of:
  • Testing/validation of the SEID criteria is necessary
because including it would, in my opinion, stop many patients signing up to the petition because they would see this as an attack on the IOM report recommendations. We all know that the report has been divisive and people are now very sensitised on this issue. If they see a demand that relates specifically to recommendations on the name or criteria, I think we'll lose a lot of people.

It's hard to get people to bother to sign petitions. I don't think I've ever seen one go much over 1,000. I'd guess (based on membership of PR and other online orgs) that we have around 10,000 to 20,000 PWME internationally who are networked one way or another into our online communities and in that context, 1,000 signatories to a petition is not impressive.

I think it's best not to incude demands that are going to turn a lot of people off.
 
Messages
15,786
I disagree with the priorities. Getting folks health care when there are no standards of care to start with is just a recipe for disaster.
Getting patient care, for me, right now is even being able to get a doctor to see. Any doctor, not even an ME/CFS doctor. It is legal for doctors here in the U.S., GPs, cardiologists, rheumatologists to refuse any treatment at all because a patient has CFS. That is, I can't get treatment from any docs right now (not ME/CFS docs) for my co-morbid conditions or even get a check-up from a GP, because docs are allowed to refuse me treatment on a problem unrelated to ME/CFS, just because I have ME/CFS. Asking for docs not to refuse treatment is patient-care.
I think you're both right. We need care from our GPs, but we can't force GPs to do it, just as we can't force any existing specialty to take in ME/SEID. A petition is not going to change that at all.

So I think it's an excellent goal, but I don't think a petition is the way to accomplish it. Maybe lawsuits against doctors refusing to treat ME/SEID patients at all, or appropriately, even for unrelated problems could be an option for that, on the basis of discriminating against a disabled group. If shops can't keep us out on the basis of our illness, doctors' offices shouldn't be able to either.

But regarding a petition, I think a good focus would be upon research funding, and one or two closely related issues. Patient care is a different battle, and on a very different battlefield.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think you're both right. We need care from our GPs, but we can't force GPs to do it, just as we can't force any existing specialty to take in ME/SEID. A petition is not going to change that at all.
You cannot fix that with a petition to just fix that. However this is in large part due to lack of doctor training. Addressing medical education is definitely something we can be asking for.
 
Messages
15,786
I'd also like to add in Solve's demand for ME/CFS research issues to move out of Women's Health and into NAIAD or NAIDS. That seems to be crucial to progress.
I agree. It's closely related to the research problem, and has been a huge barrier for us in several respects (their staff, the funding via that department, and the inaccuracy of placing ME/SEID in it).
However, a deal-breaker for me would be the inclusion of:
  • Testing/validation of the SEID criteria is necessary
I wouldn't consider it a deal breaker, but I would consider it a bad idea to include with a petition focused on research. It's just not really relevant, it would alienate some patients and advocates, and it would cause a lot of arguing in the process.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
It's hard to get people to bother to sign petitions. I don't think I've ever seen one go much over 1,000. I'd guess (based on membership of PR and other online orgs) that we have around 10,000 to 20,000 PWME internationally who are networked one way or another into our online communities and in that context, 1,000 signatories to a petition is not impressive.
We have maybe 2500 serious advocates online. From time to time I meet patients who are online but don't get into advocacy or anything negative. Many more are too sick to do this. I have met one or two members of entire groups who think this is all psychological and people who get into online advocacy have serious mental health issues.

This question keeps coming up and to date there are no good answers.

PS My guess is for really effective advocacy you need hundreds of thousands of signatures. Yet I know of non-ME petitions that work with tens of thousands. That's a whole order of magnitude larger than what most of us usually see on petitions.
 
Messages
15,786
You cannot fix that with a petition to just fix that. However this is in large part due to lack of doctor training. Addressing medical education is definitely something we can be asking for.
Yes, and I think that would fit in with a research-focused petition. But the problem is - are good educational materials available for us to demand to be distributed? And if they aren't, how do we reasonably demand that they get created - and is that then too off-topic?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Yes, and I think that would fit in with a research-focused petition. But the problem is - are good educational materials available for us to demand to be distributed? And if they aren't, how do we reasonably demand that they get created - and is that then too off-topic?
That is why demands have to be researched and developed. As it stands they will get referred to the CDC toolkit or similar. That would be worse than doing nothing. Like it or not the only near term resource that might help is post-IOM material.
 

aimossy

Senior Member
Messages
1,106
If you go down the petition route. We would need a fb and twitter campaign focused on reaching more people. You can target people with me/cfs in their news feeds through adverts.That costs money but you can do it cheaply and I would be prepared to set one up for a focused white house petition. There is over 200,000 in the US on fb that look up chronic fatigue in their web browsers. You target through interests. We could reach many people this way.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
It is very hard to get petitions for ME to work when the media is putting out the message that we are just a bunch of worried fatigued individuals who find a day's work exhausting... (cue dramatic image of attractive office worker sleeping over a pile of paperwork).

The other message put out is that we shouldn't be taken seriously, because doing so will only make us think there is something really wrong with us. This message is almost subliminal... and might be all it takes for folk to hold back from clicking to sign a petition... (you know, don't really want to be seen supporting crazies... even if they later prove not to be crazy, I'd better just steer a wide berth in the meantime...).

On top of that our petitions are not about time-limited issues, nor do they involve high profile personalities or cute animals.... so we don't succeed.... :(
 

Nielk

Senior Member
Messages
6,970
@oceiv -
I am very sorry to hear about your experiences with doctors refusing to care for you because you are a ME/CFS patient, here in the U.S. Are you sure that this is legal?

I have had bad experiences with doctors, once they hear that I have ME/CFS. They are dismissive and some are unbelieving but, I never had a doctor who refused care, especially for co-morbid conditions. This is immoral and should not be legal.

Would you want to start another thread about this topic? If this has been your experience I am sure that there are others who have gone through this and might be able to advise you.
 

SOC

Senior Member
Messages
7,849
It's hard to get people to bother to sign petitions. I don't think I've ever seen one go much over 1,000. I'd guess (based on membership of PR and other online orgs) that we have around 10,000 to 20,000 PWME internationally who are networked one way or another into our online communities and in that context, 1,000 signatories to a petition is not impressive.

I think it's best not to incude demands that are going to turn a lot of people off.
If we want our petition to be effective, it needs lots of signatures. That means we need as many non-patients as patients (and probably more) signing it. To get that, we need a petition that all kinds of people can understand and get behind. If we include issues non-patients don't understand or are not sure they know enough about, we lose signatures.

Many people, not just PWME, can understand and will support a call for increased funding given the brief evidence we could use to support the call. We should run with that. And yes, that probably means we should cite the IOM report's references to the serious nature of the illness and the gross underfunding. The petition does not have to mention the criteria or the name. We need the clout of a government-funded study supporting our call for action if we want the population beyond patients to get behind it.

We can make another petition for topics/issues/goals that are less understandable to a bigger population -- better physician education, improved local medical care. Those topics are critical, and we as a patient population need to address them ASAP, but they are not going to get the number of signatures a straight-up call for increased research funding is likely to get.

Every time to add another topic to a petition, you are more likely to lose signatories who don't agree with that topic than you gain in signatories. To get the most signatures, we need individual petitions for each topic. That way people can sign as many as they agree with and not sign the ones they don't agree with. Better that than having one petition that some people won't sign because they don't agree with topic A, while others won't sign because they don't like topic B.
 

Kati

Patient in training
Messages
5,497
@Kati I hope you reconsider. Getting patient care, for me, right now is even being able to get a doctor to see. Any doctor, not even an ME/CFS doctor. It is legal for doctors here in the U.S., GPs, cardiologists, rheumatologists to refuse any treatment at all because a patient has CFS. That is, I can't get treatment from any docs right now (not ME/CFS docs) for my co-morbid conditions or even get a check-up from a GP, because docs are allowed to refuse me treatment on a problem unrelated to ME/CFS, just because I have ME/CFS. Asking for docs not to refuse treatment is patient-care. If you and others can see any doctors, for OI, for a check-up, for something that flares up, consider yourself very lucky.

When Alex and I were discussing outside the thread, we talked about the broader political situation here in the U.S.. Wrt to both funding and non-funding issues, the congress is in near-complete gridlock. They agree to pass things, even necessary things only very infrequently. As a very stark example: We are 7 months into a war that has not been debated or authorized by congress. For years, dozens of Presidentially-appointed positions were vacant. For months of this war, congress didn't agree to approve funds. We are at that level of dysfunction. Our attorney general has been trying to leave after years on the job. He cannot leave because the vote on his replacement is not allowed to go forward. Getting U.S. attention before they agree on the once-a-year funding emergency bill, is a miracle. If we reach them on any issue after the big budget negotiations, it will wait and languish. It will not be implemented until 2017. If I wait to see a doctor, any doctor, till then, I'm really not sure how I'll survive.

To address what I missed earlier, @Nielk I agree more with you on more issues with the IOM report than with others. But I disagree with rejecting the report completely. Those opinions are on the report, itself, not the thread. This thread has not been taken over by pro-IOM people because I'm still here.

I was earlier going to say that things might look up/tomorrow/today (depending on your timezone) on this thread, but I'll just say, that one way or another some sort of positive action or advocacy is going to happen soon. I hope there will be a short-term one here. But if not, hopefully other positive efforts will occur. I think this group could still accomplish great things if we agree to do so. But we can only do so if we compromise.

@oceiv i am very sorry about your experience in health care. It is extremely difficult out there and I share that experience too and i picked up PTSD from that too.

Access to care: no patient should be refused health care (related to the illness or not) because they have this disease.

The wording needs to be very precise. We are talking discrimination here. Physician groups will not be happy with this because they want a way out, they want the ability to refuse these patients because they don't know enough about the illness. I know, I've been there.

Still, the big elephant in the room is the abyssmal lack of funding. Attached to that, the disease needs to get out of the OWH and into a real institute.

What will move the field forward? Money and research. Education. A medical specialty.
 

Kati

Patient in training
Messages
5,497
If we want our petition to be effective, it needs lots of signatures. That means we need as many non-patients as patients (and probably more) signing it. To get that, we need a petition that all kinds of people can understand and get behind. If we include issues non-patients don't understand or are not sure they know enough about, we lose signatures.

Many people, not just PWME, can understand and will support a call for increased funding given the brief evidence we could use to support the call. We should run with that. And yes, that probably means we should cite the IOM report's references to the serious nature of the illness and the gross underfunding. The petition does not have to mention the criteria or the name. We need the clout of a government-funded study supporting our call for action if we want the population beyond patients to get behind it.

We can make another petition for topics/issues/goals that are less understandable to a bigger population -- better physician education, improved local medical care. Those topics are critical, and we as a patient population need to address them ASAP, but they are not going to get the number of signatures a straight-up call for increased research funding is likely to get.

Every time to add another topic to a petition, you are more likely to lose signatories who don't agree with that topic than you gain in signatories. To get the most signatures, we need individual petitions for each topic. That way people can sign as many as they agree with and not sign the ones they don't agree with. Better that than having one petition that some people won't sign because they don't agree with topic A, while others won't sign because they don't like topic B.

Petitions with potential to be considered would require at least 100,000 names on it.I don't think we have had a petition that reached out 5,000 names.

In a case like this, we can't put our eggs in the same basket. i know people will not necessarily like this, but letter read as a public comment to CFSAC, demonstration of 100+ people in Washington, another fax campain to DHHS (it drove thme nuts, and remember? :D:rolleyes: ) hiring a lobbyist, could be alternatives to the dreaded petition.
 

medfeb

Senior Member
Messages
491
I've been offline for a few days so admittedly just catching up and might have missed something so let me know

A question was raised about the validation of criteria...
The issue is that as currently framed in the Clinical Guide, which is what doctors will most likely read, the SEID criteria are too subjective. The criteria have not been validated. They recommend symptom assessment tools that have not been validated, sometimes not even used in this disease, are acknowledged to be hard to use in the clinic and do not have specified thresholds set. They don't reflect the most severely ill or some key neurological symptoms. We could do a whole thread on that issue alone.

Jason's papers have exhaustively cataloged the problems with over diagnosis and missed diagnoses caused by these issues. Rolling out the Clinical Guide without validating that it does what it is supposed to do is crazy and creates a risk of overdiagnosis, especially in the hands of general practitioners who do not understand the disease or key concepts like PEM and will be faced with patients who have a range of conditions with similar presentation.

IMO, If we want to improve medical care, as the IOM calls for, and escape the morass of confusion and disbelief, we need to insist on clear, solid diagnostic criteria and accompanying medical education that helps doctors understand and reliably diagnose the disease. And that requires validation of the criteria and validation and operationalization of the recommended assessment tools to ensure that we don't go down another dead end that could take years to reverse. It is standard process to validate scientific procedures. Why would we not do that here?

In the meantime, there are things that should have been done long ago and can be done immediately to improve medical care - e.g. CDC could put up a black box warning about exercise, remove the recommendations for CBT and GET and the references to child abuse and maladaptive coping as risk factors. CDC doesn't need to wait to fix these well-known problems.

I don't see that this legitimate concern invalidates the strong IOM report messages about the need for better medical care or more research funding. It also doesn't keep us from pushing for the research funding immediately and some have already started that. I agree with Neillk that the research case definition issue must be addressed (what to be used, how do SEID and CCC fit together or not) and also key issues around study design and the overall research strategy as the goal is driven.

But ignoring the issues with the clinical diagnostic criteria and clinical guide will make it difficult to achieve the goal to improve medical care and could further muddy the situation.

On a separate note, I agree with Niellk's points about the IOM being the product of a flawed process in which HHS unilaterally decided to do this against the recommendation of CFSAC and the experts. For me, that reflects a huge problem at the heart of the flawed U.S. federal policy toward this disease - a broken model of engagement in which HHS routinely ignores CFSAC recommendations and input of patients and experts. This problem needs to be fixed and even the IOM acknowledges the issue, both specific to IOM genesis and more generically. Calling it out does does not invalidate the positive aspects of the IOM report. This issue was the motivation behind the engagement model goal that was in one version of the goals list earlier in this thread.

Food for thought… is it possible that the difference in views on the importance of the SEID validation issue reflects a country-specific difference since the rollout is recommended for the U.S.? There are going to be country specific goals when you get down to the details that patients from those countries will need to deal with.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Food for thought… is it possible that the difference in views on the importance of the SEID validation issue reflects a country-specific difference since the rollout is recommended for the U.S.?

Thanks for your thoughtful comments on this, medfeb.

My concerns about the SEID issue being on the list don't relate to its importance. Rather, they are that at first glance it seems likely to be taken as an anti-IOM item and I think that that could easily be enough to turn many people away from signing the petition.

People won't read a long justification of our points: they'll have a quick glance and either sign or not sign.

I think we'd lose a lot of people at that point. Even those who agree with the basic point will look behind it for a hidden agenda, because of the polarisation and bitterness and counter-advocacy between patients that has sprung up in recent weeks.

As a standalone item on a separate petition it could find its own support but I think it could seriously handicap a petition containing other items.