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

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
. A bit more on patient care: How many of us are without a doctor because we're sick with ME/CFS and for only that reason? How many of us don't have even one ME/CFS expert in our whole state or country?

I can answer "me" to those things but " How many of us are getting worse because we have no local medical care?"

As there is no current treatment which works for all, how can you even know you would be getting better if you had local medical care? In my case the lack of the whole government services not under standing ME stops me from being able to get any home help for ME and it is that which is causing my condition to decline. Even if I was seeing a good specialist I still would be declining due to having to over do things all the time just to live.

I've seen 6-7 CFS specialists who offer the current standard ME/CFS care and they have been of little help to me so far., sure some of my symptoms are helped by drugs but Im still unable to do much at all. The only way current standard care will improve is by research either supporting the things which are currently "fringe" things to the rest of the medical profession or in finding new treatments.

My current situation is the main reason I'm determined to change things. But many others are in an even worse position and can't even speak out. My situation could be helped by local medical care. If I manage to find another doctor soon, it will prevent a crash. If I don't ....??? Good research is very important. But good research takes time to do and more time to apply. I'd guess that many of us have funding research in their top goals. This conversation has echoed that message. But a local doctor could help this month.

"maybe" a local doctor could help you this month but what if you get worst or get new symptoms which they cant treat now. There are many ME symptoms they cant treat at all. I get over 90 different symptoms with the ME and even the ones I have which are treatable, are proving to be extremely hard to treat eg Im on Florinef and Clonidine for POTS but still need to be pushed in a wheelchair when taken out shopping.

Im currently back to having to sleep in afternoons too and there is not treatment at all for that. So once again it comes back to research, many of us cant get good care till more research is done so we have more options for treatment.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think using the IOM report to support our demands is a good idea, even for people who dislike the name, criteria, or entire IOM process.

The basic goal is to persuade people to do what we want them to do: more funding, more biomedical research, better clinical care, etc. When we seek to persuade someone, we need to do it on their terms - the message has to make sense to them, and it has to be persuasive to them.

Im with Valentijn with this. As much as I hate the whole IOM thing, I think it should be used where it suits our purposes. We need to use whatever we can.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I did too and then I realised that I didn't have a very good reason for thinking that! Do you mind if I ask what your reasoning is on this?
If I am going to sign a petition, I am putting my name to everything in that petition. So if it has three things on it, I have to agree to all three. It it says ten things, I have to agree to all ten. The more there are, the more things might stop me from signing. Several petitions lately have had good points but also things I could never sign. I don't think I am alone in this.

A single message is not a confused message. Its easy to see if you agree or disagree. Its easier, in my opinion, to gather support. This does not mean you can't have a lot of additional supporting material, but not as part of the petition itself. More as reasons to sign the petition. If I disagree with some of those reasons it does not matter, as I have my own reasons for signing to the main point.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
If I am going to sign a petition, I am putting my name to everything in that petition. So if it has three things on it, I have to agree to all three. It it says ten things, I have to agree to all ten. The more there are, the more things might stop me from signing. Several petitions lately have had good points but also things I could never sign. I don't think I am alone in this.

A single message is not a confused message. Its easy to see if you agree or disagree. Its easier, in my opinion, to gather support. This does not mean you can't have a lot of additional supporting material, but not as part of the petition itself. More as reasons to sign the petition. If I disagree with some of those reasons it does not matter, as I have my own reasons for signing to the main point.

In the abstract, I agree that it's an issue that people might not want to sign up to a list if they disagree with one or more items on it. But it the things that we're calling for are things that would get universal agreement then I don't see that as an issue. I think it's important to keep this discussion focused on the specific list that we're discussing, rather than the abstract:

http://forums.phoenixrising.me/inde...eir-view-of-the-iom-report.36380/#post-576195

and so far, the list of demands (extracted from the list of things that we agreed on, not all of which are demands) is:
  • We need more research funding from our governments, including urgent need for biomarkers which are easy of access.
  • 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.
I think that all patients would agree with everything on that list, even though we might need to work on the specifics (making sure that 'better patient care' doesn't equate with CBT/GET, for example). I don't know that all are appropriate for a petition - I'd say that #1, #3, and #6 are, though, and they form part of the same picture.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I was thinking today that we have something which ties in with the need for more research, which we need to start thinking about ASAP and that is the next review of the IOM. I think we can all agree that we want the next IOM report to be better and its in reports such as this in which real change can come from.

Why should we be thinking about that now? I know people are thinking.. We need to start thinking about this as it takes years to organise and do a studies and the IOM report will hopefully be reviewed within 5 years.

A lot of us aren't happy as the IOM report left out a lot of ME studies showing our abnormalities which are referenced in the International ME critieria as they just didn't met the right standards for IOM be it too small or not having follow up studies etc. It would be great if these abnormalities make the next IOM review if we could get the funding for research to be done in these areas and have it done and published before the next IOM review.

That would be a goal which would require many steps.. getting more researchers interested, getting funding.

Having our inflammation and neurological abnormalities which missed out but may turn out to be quite important , accepted in something like IOM, will draw more researchers to us who specialise in those fields and not just that but it will get researchers too thinking of treatments around the abnormalities and of cause each one officially recognised will lead to our disease being treated more seriously.

These follow up studies if they were done, could well lead to our illness being given a speciality.

Maybe we can make greater headway faster by following up on the "loose ends" of our research studies to finally get a lot of stuff actually confirmed and recognised. It's like we currently have a lot of wasted research due to no follow up.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In the abstract, I agree that it's an issue that people might not want to sign up to a list if they disagree with one or more items on it. But it the things that we're calling for are things that would get universal agreement then I don't see that as an issue. I think it's important to keep this discussion focused on the specific list that we're discussing, rather than the abstract:

http://forums.phoenixrising.me/inde...eir-view-of-the-iom-report.36380/#post-576195

and so far, the list of demands (extracted from the list of things that we agreed on, not all of which are demands) is:
  • We need more research funding from our governments, including urgent need for biomarkers which are easy of access.
  • 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.
I think that all patients would agree with everything on that list, even though we might need to work on the specifics (making sure that 'better patient care' doesn't equate with CBT/GET, for example). I don't know that all are appropriate for a petition - I'd say that #1, #3, and #6 are, though, and they form part of the same picture.

Vague petitions do bother me as the requests can be twisted hence I like them quite specific eg I do not want more research done if its now going to be a ton of studies about "excertion" (something I fear due to the new name, instead of fatigue studies we may end up with a huge focus on excertion ones with nearly everything else ignored).

If a petition is done re wanting more research. I think it should also focus on just that in the petition with it being clear also how we want the research conducted. eg We want better quality studies!!! (stop subjective testing of things which can be tested objectively) Im fed up with our research money being used to do poor studies, severe patient group included in studies etc. or the study should make it clear it doesn't represent the severe group at all etc
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Does that need a separate thread, @taniaaust1? Or are you suggesting it should be added to the list of goals for the petition?

My suggestion was for it to be a goal to work towards eg it could be part of a calling for more funding petition, listing research we want funded NOW and done.

I don't like vague petitions. I don't want to see most of our funding money now going into exertion studies (I would almost bet that is probably what we will see next happening) and I think being specific may help get it to things we want it to go to esp if there are studies we urgently need done.
 

Kati

Patient in training
Messages
5,497
i think the list of demands needs to be short and only include the major points.
i am reviewing the first point I made, "we need more funding". It is not clear enough. We need at least 100 millions a year from federal funding for research.

When we are making 10-15 request, it feels to me like we are diluting our requests and our message.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Carol Head of SMC Iat her event today. Asked for 250 million dollars.

Let's go for that, then - I didn't watch this event but it sounds as though she was looking at tables of figures and working that out mathematically in relation to funding on other diseases:

http://forums.phoenixrising.me/inde...d-c-webcast-march-25.36224/page-2#post-577890

I've got no problem at all with a big ask. It makes sense to ask big. The worst that can happen is that we get less than we ask for, and if we're asking for $250m, so what? It sets a good ballpark.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I don't know that all are appropriate for a petition - I'd say that #1, #3, and #6 are, though, and they form part of the same picture.
I don't know that a petition is the way to go here. This list is not something that will easily be addressed by a petition. That is a different question. Who will it go to for example? Each is an actionable item in its own right.

PS Each is an advocacy campaign in its own right.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
For example, here is a petition to the NIH for more funding, which can be signed by US residents. If you live in the US and have not signed I implore you to do so.

http://forums.phoenixrising.me/index.php?threads/petition-for-more-nih-funding.36279/

Yet this petition lacks something important. A mechanism. Most NIH funding is a big pot that you have to compete for. CFSAC has addressed this issue a bunch of times and their recommendations have been ignored.

Yet the petition is focused. Its not hard to see if you want to sign it or not.
 

Gingergrrl

Senior Member
Messages
16,171
@oceiv I am not able to read or keep up with this thread on a daily basis but if you get to the point that you are taking a vote on PR or want opinions re: your final consensus, please tag me, as I am very interested to hear how this turns out! Thank you again for doing this.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I don't know that a petition is the way to go here.

Actually, neither do I - I've been using 'petition' as shorthand for 'list of demands' whether that's a petition and/or letter-writing campaign or what.

But perhaps we need to decide what we're asking for first, and then consider how we're going to ask - I'm sure @oceiv will have ideas about that.
 

Ember

Senior Member
Messages
2,115
I'm content to let @oceiv decide this, as the mover and shaker here.
I agree we want to build supporter numbers but I don't think that two people out of however many are reading this thread is an indication that we shouldn't cite our big weapon (the IOM report).
I think using the IOM report to support our demands is a good idea, even for people who dislike the name, criteria, or entire IOM process.
As much as I hate the whole IOM thing, I think it should be used where it suits our purposes.
What happened to letting @oceiv decide this? From my perspective, this thread has gone off topic.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
What happened to letting @oceiv decide this? From my perspective, this thread has gone off topic.

What happened was that @oceiv then also posted on that same topic without objecting to it as being off-topic, and our posts were in response to hers.

You've left her response out of your list, which is what makes it appear as though I am contradicting myself and as though I and others are off-topic.

http://forums.phoenixrising.me/inde...ew-of-the-iom-report.36380/page-7#post-577610

oceiv said:
As for using quotes from the IOM report, I don't have a preference, but I did see two people indicate it was a deal-breaker. IMO, we want to build our supporter numbers. We have strength in numbers because our coalition will hopefully include people of many different opinions about the IOM report. We can absolutely distinguish our action from other efforts. This will take all of us working together to do so and people who know why other efforts failed.
 

SOC

Senior Member
Messages
7,849
If I am going to sign a petition, I am putting my name to everything in that petition. So if it has three things on it, I have to agree to all three. It it says ten things, I have to agree to all ten. The more there are, the more things might stop me from signing. Several petitions lately have had good points but also things I could never sign. I don't think I am alone in this.

A single message is not a confused message. Its easy to see if you agree or disagree. Its easier, in my opinion, to gather support. This does not mean you can't have a lot of additional supporting material, but not as part of the petition itself. More as reasons to sign the petition. If I disagree with some of those reasons it does not matter, as I have my own reasons for signing to the main point.
I agree with this. I will also add that a similar idea applies to the readers of the petition -- our audience, the people we want to do something. If we ask for three things in one petition, we dilute the message of each. If the target audience sees one request as impossible or unreasonable, they can easily mentally dismiss the whole thing. Or, they can cherry-pick the one request they find most appealing for whatever reason and ignore the others. That's not what we want.

We want our message to be clear and unambiguous. I'm not opposed to multiple goals, but I suggest that each goal should be addressed independently with separate petitions and other advocacy efforts. I think coming at our target from multiple directions will be more powerful than coming at them from one direction with one big list. They will see thousands of signatures on three different petitions, not only one petition. That is good. It looks bigger, even if it's the same people signing all three petitions.

Three separate petitions would have to be ignored or dismissed three different times. That will be harder for our target audience to do than to dismiss one petition with three different requests. We want to make it hard for them to ignore us, not easy.

So, I'm still in the one goal camp... sort of. I'm all for multiple goals, I just thing we should address them one at a time.
 

oceiv

Senior Member
Messages
259
Taking a different perspective for a moment. I'd like to ask everyone (as a perspective experiment) what would happen if we fail to reach agreement and take action to demand changes and that patients must have a say in what happens next?


Current "Anti-IOM" and "Pro-IOM" organizational efforts will go forward. Since there are established orgs on both sides, with what message will our governments be left? Might our governments say "we're getting criticism from both sides, so we must be doing something right?" This line is very popular with U.S. politicians and with the U.S. media. This is often how the U.S. politicians and media justify bad deals, ones which are equally bad for everyone. The line is so oft-repeated, we could all play "Both sides are complaining" bingo.

We, as a united group of patients won't get to have our say. We won't get to demand we get a say in what happens next. We will have no influence on how or if things change for ME/CFS patients. The status quo might remain.

People on all sides of the IOM issue agree that there are huge problems with the way our governments treat our disease and how they ignore patients. Many patients (like me) are getting worse because of the neglect. If nothing changes or the government decides what changes will be without us, we're going to continue to be neglected. Good research will continue being unfunded.

The situation will be be a lose-lose for everybody. If we take collective action, we have the potential for a win-win-win for all IOM sides.
 
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