Now that CFSAC's over, what should we do?

[WillowJ]

I must of seen over 30-35 different ones over the years and NONE of them can manage my case (I get over 90 different symptoms with the ME). Thou I are in Australia.. my case is still a good example as primary care doctor situation wouldnt be any different to Amercia.

I'm not sure about Australia, but an American PCP can't be directly compared to, say a British GP. Our PCPs (the ones who are MDs or DOs; some PCPs are allied health practitioners like Physician's Assistants and Nurse Practitioners) typically have specialist training in either Family Medicine or Internal Medicine, though we don't actually title them 'specialists.'

The Internists typically feel more competent (than the Family Medicine practitioners do) to deal with a complex illness like this (supposing they have some idea that it is a true and complex illness), and may be able to somewhat manage a moderately complex case if they are intelligent and ambitious (being that we don't actually have too many specialists--hardly any normal rheumatologists, endocrinologists, neurologists, immunologists, etc. know anything about this disease, and many of our very few ME/CFS specialists started out as PCPs anyway--and you have to educate a lot more specialists to get well-rounded care than if you target generalists).

Of course it would certainly be much better to have a team of specialists (immunologists, heart rhythm doctors, endocrinologists, and so forth) well-trained in ME/CFS to manage patients, but one still needs a primary care physician to coordinate care between the specialists even in this ideal situation.

Where to begin education of nearly every doctor in the world (or, those falling in the responsibility of CFSAC directly, in the USA) is a bit daunting, but since everyone is supposed to have a primary care physician of some sort who, ideally, finds specialists for us who at the very least aren't prejudiced (not to mention having a faint idea what ME is), I won't quibble with starting there.

We have to start someplace.

Maybe rheumatologists would be just as good a goal, though, as they are used to dealing with patients like us... but they seem unwilling to keep politically incorrect diseases and might resist being given another (in addition to fibro). While I think we do have pathologies that would fit nicely in the rheumatological classification (autoimmune, joint, and muscle disorders), we don't have anything that is classically like their other patients. At least not until someone designs us better blood tests, which I would expect to be readily doable given funding and a sensible scientific approach, both of which have been sadly lacking.

Neurologists would be even better, and even given our strong immune dysfunctions I think we fit very well with them (very like Myasthenia Gravis, Multiple Sclerosis, mitochondrial disorders, and so on) but I think they are unreachable just now. Half their patients (I read on another thread) have diseases they cannot identify and they this basically represents personal problems of the patients. They would classify us with these. A paradigm shift is necessary in the world of medicine.

I'm not familiar enough with immunologists to suggest those. I think given the differences in how we should be managed versus diabetes, endocrinology is not a good idea for a 'home base' for us.

My experience with cardiologists suggests they are not likely to take us on. Also given the differences in how we should be managed versus many cardiac patients and the fact that the best cardiac testing for us is uncommon and perhaps experimental, this seems an unlikely 'home base' for us.

So I still think PCPs is not an awful suggestion for where to begin. The danger is that they do not leave off after having begun.

 

[Andrew]

Maybe rheumatologists would be just as good a goal, though, as they are used to dealing with patients like us... but they seem unwilling to keep politically incorrect diseases and might resist being given another (in addition to fibro). While I think we do have pathologies that would fit nicely in the rheumatological classification (autoimmune, joint, and muscle disorders), we don't have anything that is classically like their other patients. At least not until someone designs us better blood tests, which I would expect to be readily doable given funding and a sensible scientific approach, both of which have been sadly lacking.

We already are assigned to rheumatologists in the U.S. Or course, that doesn't really help us, because all they know about CFS is what they learned in medical school. And if you look at the website of their professional organization (American College of Rheumatology), there is nothing helpful there. I contacted them about the lack of information, and offered to work with them to put together some articles. I even submitted a set for discussion. They ignored me, despite me emailing 4 times and sending a letter to the guy in charge. They don't care.

 

[WillowJ]

I agree with everyone saying that it's not the panel members who are at fault here.

Nancy Lee mentioned that many of them have family members with the disease. Now we all know that this is not a guarantee of having a good understanding of it. But it can be a start towards being disposed to care.

Even in the matter of leaving the meeting early, it may be that the matter was related to expense. I don't know where everyone was coming from, but I do know that flying across country or even a state or three is no small matter. The members are paid $200 per day for serving on the committee (I assume that's per day of meetings, not per day of the term all four years). $400 is generally not enough to pay for airplane tickets and a hotel in the Bethesda area. It's possible that some members may have another sponsor (say their university) which might help pick up the tab, but it's not a safe assumption that this would be true in all cases.

The solution seems to be to get better funding. Whether from Koh and Sebelius, via getting a mandate from Congress, via pressure from (dreaming here) the press (that is the actual job of the press, as they would tell you themselves, which currently only Tuller, King, and a few others are doing as far as we are concerned) and (dreaming again) general outcry from doctors (should be happening, but since most are ignorant....).

 

[usedtobeperkytina]

Going to make comments in multiple posts as my brain cannot remember all I want to say in response to the comments long enough to put it all in one post.

I had a challenging day today in Washington and then the plane trip home. Look for my last blog on One Agent for Change tomorrow about the CFSAC.

First, the CFSAC is appointed by the Secretary of Health and Human Services to give her recommendations on what should be done on ME/CFS. Because it is in the Office of Woman's Health, the recommendations go to this high office. That's all they do is recommend.

However, despite their having no authority or budget for actions, their role is very important. First, because it is in the Office of Woman's Health, it brings ex-officios together to discuss this disease and how their agency can do something about it. These agency reps are doing this as part of their job and their boss, or the boss of their boss, will see whether they are doing a good job in this area. Without this committee, they could ignore this disease without any accountability. They must speak on record as to what they are doing.

Also, I think it should be noted that we do have experts that know the disease. And, this reflects what the higher ups think as they appointed these people. They could easily appoint a bunch of people who don't know the true nature of the disease.

By having this committee, the public can speak and it go on record. None of the government agencies can say they didn't know. The patients can show which topic is important, as was done this time with the toolkit. The patient testimony emboldens the committee members to speak up and make bold recommendations, knowing they have the backing of the patient community, as was stated publicly and on the record.

Once the recommendation is made, then advocates can hold the government agencies accountable. In fact, the Congressional Budget Committee (I think that's the name) allocated funds to CDC and recommended how that money should be spent, based on the CFSAC recommendations. And, it took us a couple of years, but they are finally following that. Without the CFSAC, which led to Congress instruction, patients would have no way to insist on certain actions as being from experts, the experts the federal government chose. We need these experts to go on record so we can hold the government agencies accountable.

Tina

 

[usedtobeperkytina]

Floyd, you make good points about patients giving specifics about what CFSAC can do. The CFSAC has asked for more funding in years past with no reaction. Now, things are worse because of the economy and the political climate. I wondered as I heard the request for more funding if CFSAC members were thinking that that won't work, so give them something else to ask for. Still, we must still bring attention to the disparity and get it on the record. They have money, they just spend it on other things.

Dr. Grobstein did a good job of being very specific on new ideas of how to move the CFSAC beyond talk to a structural way of making things happen. I want to caution people though. The patients telling their stories is very important. Dr. Ron Glaser said in his swan song that he had thought of quitting the committee numerous times from the frustration. Yet, when he came to the next committee and heard the patient testimony of how awful and desperate their situation is, it gave him the motivation to stay with it. So, this type of testimony gives the emotional impact that motivates them to try. I talked to some of the members and ex-officios, it makes a difference. But, specific suggestions on how to make things better is also helpful.

We too think CFSAC members should have information a week ahead of time. This meeting was especially challenging. Usually, it is held in May. But they had not gotten the new members approved by then, evidently. Of course, if people are nominated, then asked to sit on the committee, they may say no. And then others must be sought out and asked, etc. Hopefully, November's will be more planned ahead of time, with more notice to all and documents provided ahead of time. I couldn't imagine all the documents they get without having it at least a week ahead of time.

Normally, the DFO makes phone calls and someone else chairs it. Dr. Marshall, as you know, had to fly to Europe. It's not normal for a DFO to chair the meeting. Maybe, as is most common, they should have an alternate chair instead of the DFO.

As for members leaving before meeting is over, it is not unusual. Although, it does seem more did this time than in times past. I was there. It felt like it was 6:30 when it was just 4:50. Many of them had to catch flights out that evening. One idea might be to move the discussion part of some of the issues for possible recommendation to other times. For example, could the ideas of pediatric recommendations have been done on the day before? Maybe intersperse thirty minutes of discussion for possible recommendation four times during the two-day meeting so it doesn't all happen at the last hour of the last day, when all are tired and some can't stay.

As for time for orgs this time. I thought of the same issue about giving that time. However, we have four new members and they, and even the old members, do not know what the orgs do. It would only be a name. So, this gives them some information for context. Also, orgs. will somehow now sit as a non-voting member of the committee. So, this is good introduction. I also thought some patients would want to see an overview of what the orgs do. It is not unusual to have private / public partnerships for projects and except the CAA / CDC contract years ago, we don't have any private / public partnerships on ME/CFS. With the desire to distribute the primer, maybe this is an opportunity. This is the way many things are done. And getting to know the orgs (committee members and government agency reps) that dialogue can start.

Tina

 

[WillowJ]

We already are assigned to rheumatologists in the U.S. Or course, that doesn't really help us, because all they know about CFS is what they learned in medical school. And if you look at the website of their professional organization (American College of Rheumatology), there is nothing helpful there. I contacted them about the lack of information, and offered to work with them to put together some articles. I even submitted a set for discussion. They ignored me, despite me emailing 4 times and sending a letter to the guy in charge. They don't care.

Well done for sending them info.

I agree that this specialty is not helpful, even though rheumatologists tend to know that there is such a thing as CFS and be able to make some attempt to treat it. I've never yet met a rheumatologist who thought CFS was something other than a kind of fibro that has additional fatigue on top of fibro fatigue. So if you want pain and sleep medicines and advice to take some moderate exercise, that's what you'll find in rheumatology, but if you want something specific to ME, it's exceedingly unlikely you're going to find it in a rheumatology clinic. Though it's possible if they are really good they might offer tilt table testing--dysatonomia is common in fibro as well.

While many rheumatologists will claim to treat CFS, I don't think the American College of Rheumatology officially recognizes it. As you said, there's nothing helpful on the site. There are a total of three items on the site (besides journal articles) which even reference CFS, and they are merely lists of references in which one or two of them happen to mention CFS in addition to another rheumatologic disease. Nothing is available for patient education.

The Arthritis Foundation similarly doesn't list or mention CFS (except as a diagnostic exclusion, a passing comment related to "interest" in EBV in connection to CFS and other conditions in response to a question, and in the magazine CFS vs. fibro was addressed but I can't pull up that article).

It might be easier to start there than in, say, neurology, but I doubt they would be too happy about it at this point.

And all the panel members at CFSAC repeatedly said that there was no specialty or home for ME/CFS.

 

[usedtobeperkytina]

It will be a long and difficult road to travel, but I think we need to get Congress to charter a new CFSAC that reports back to Congress. That way a separate branch of government would have oversight power of the Committee. The HHS Secretary could not constantly ignore CFSAC recommendations without potentially being called on the carpet by Congress.

PANDORA agrees that there needs to be a congressional committee. However, at least, the DFO announced that, finally, the response from the secretary will be more than, "Thank you, I got your recommendation. It is a disease that needs attention." They CFSAC will finally get a more detailed response to their recommendations, so they can make recommendations in the future that will more likely be implemented.

I think this is huge.

Also, the government agencies are meeting in ad hoc working group to see what they can do. These meetings don't involve committee members and they happen between the CFSAC meetings. This is sending a strong message to government agencies that this is important. Remember, if they don't perform after their boss tells them do, it hurts their career. And when the committee and patients all complain about the same thing, it reflects badly on their job performance. That wasn't a big deal, until Koh came on and showed the bosses do want something done.

Tina

 

[usedtobeperkytina]

By the way, there was a united message that many referred to in the public testimony. The whole point was to show that the patients are united on four main problems that need to be corrected. Mary Dimmock read a brief version of that letter. It was powerful. Let them not say that they can't act because the patients don't even agree on what needs to be done. This is also the idea behind the Coalition 4 ME/CFS. Other diseases have big coalitions or associations. We have multiple small ones. The small ones do not have the numbers and money to exert the kind of power that is seen in other diseases. So, as has happened with other diseases, the orgs. must work together to speak more unitedly as one large group that will not be ignored.

The joint letter to CDC, the creation of the Coalition 4 ME/CFS and the joint letter of concern to Koh, Sebelius and the DFO are great strides toward making this happen.

Tina

 

[Roy S]

It will be a long and difficult road to travel, but I think we need to get Congress to charter a new CFSAC that reports back to Congress. That way a separate branch of government would have oversight power of the Committee. The HHS Secretary could not constantly ignore CFSAC recommendations without potentially being called on the carpet by Congress.

Folks, I suggest paying close attention to what mezombie posts about Washington stuff. She really knows what she's talking about.

 

[Valentijn]

Another thought is to attempt to piggyback on other areas where the govt. is funding research that might be helpful like Gulf War Illness, maybe autism, MS, etc.

I think it's going to be Gulf War Syndrome that gets the attention and committees and funding. Why? Because ignoring it caused/causes a political fire storm since it involves veterans, and because the government is stuck footing the bill for veterans disabled by it. At least we'll probably benefit from that research eventually, since it's exactly the same disease, aside from requiring Gulf War Service and probably being triggered by toxins more than viruses.

But that requirement of Gulf War Service will probably remain part of the criteria as long as possible, to keep as many people as possible out of that category. Maybe we should change the name from "Chronic Fatigue Syndrome" to "Non-Military Gulf War Syndrome". Since they're obviously not interested in calling it CFS when it happens in the military

 

[alex3619]

I agree with Tania in post 35, and though I use less colourful language I more or less agree with SilverbladeTE in post 40. The system in a time of austerity is happy to lose billions of dollars/pounds every year rather than spend a few million on research. Its absurd. Thats quite apart from deliberately ignoring the huge patient toll, plus the toll on their families.

I do not think this is specifically directed at CFS or ME though. I think this is an entrenched failing in society. We just happen to be one of the main groups its happening to, if not the number one target (based on our severe underfunding in research).

In a time when governments are trying to save money, they are focussing on the wrong things. Rather than fix the problems they want to stop fixing the problems for some short term savings. This diverts costs from one part of the national budget to another, and sometimes diverts it to state budgets. Somebody pays somewhere. There is a limit to how much they can slash and burn budgets aimed at solving the problem. These problems are not getting better. They are getting worse - and by these problems I do not mean ME specifically, or even CFS, but a range of issues including disability issues that have been ignored for as far back as I can research.

They also play pass the buck - SEP, someone elses problem. This is a global failure in leadership. I do not want to single out the USA here. Very few countries in the world have stepped up to try to solve these sorts of issues, though in the case of CFS Japan might be different because it has a coordinated CFS research program. When the system fails its up to leaders to get it back on track. Its why we have presidents and prime ministers after all. Every single government in the world has failed by these measures for generations.

There are also diversionary government agencies ... see, we are doing something. In the USA this included the CDC and CFSAC, though it might be the case that the CDC is trying to change - its still I work in progress so I am witholding judgement. In the UK we have both government and private concerns. Government includes NICE which is not really about clinical excellence or it would not be such a failure. They also have the Science Media Centre which is about promoting certain agendas not a broad and balanced promotion of science. Its a political group, not a scientific one. Add to this generations of complete indifference of almost every medical organization in the world, entrenched media attitudes and public indifference and there is a huge problem.

The CDC is making some effort. We should be engaging with them to make sure it continues. The same goes for CFSAC - it serves a useful role but it has no power, we need to demand change there. We need to be more hands on and prescriptive - the agenda should be as much ours as theirs. NICE needs to be challenged, its "evidence" based approach shown to be without substantive grounds. As for the Science Media Centre we need to counter its message whenever possible, or at least provide a balanced perspective they seem to lack.

I have a blog/post I have been writing on strategic directives as I see them. Along with several others its in the pipeline but I have more thinking to do.

Bye, Alex

PS One of the things that concerns me is a time-honoured tradition. When a problem arises, change something. Then claim that change will fix it, just have patience. When its not fixed, change something else. Repeat ad infinitum. The change can be a name (even a name change to ME will not fix things though it would be a start), agency members, agency responsibilities, isolated scientific studies (see, this is progress!) or just how things are being dished out on a silver platter to the media. Its about image not substance. Its only proven substance after something is delivered. That does not happen very often.

 

[Sasha]

[re press releases] I may not understand things correctly but if they did that... wouldnt it destroy the relationship this commitee has with gov orgs etc? They are like a big link between us and the gov... maybe if they did that it would put an end to all by going to the press about the gov orgs not listening at all.

That's a good point. My thinking, though, was that there doesn't seem to be much of a relationship to destroy. Does CFSAC actually have anything to lose, at this point? It seems to be like one of those awful marriages where one person has all the power and just ignores what the other one wants. Maybe it needs the threat of divorce - or actual divorce - and a kind of reset to zero before a productive relationship can be built from scratch.

 

[SilverbladeTE]

Valentijn
they have been happily murdering off the Gulf War Syndrome folk 20 years now by denying them help
we know for a damn fact it's deliberate and friom higher reaches of politics that that abuse has been ordered from (just not who or why though)

So if they are happy to kill off the nation's "heroes", they sure as hell have no scruples to murder the "malingerers"! :/
by those terms I mean in how the public, the voters, have been propagandized.
And so, if the politicians have no scruple over such abuse of those the Public may support, they have no fear of wiping us out because no one gives a damn about us.
hence, the name "Chronic Fatigue Syndrome" is a wonderful bit of psychological craftsmanship, akin to the "scheming Jew" or "lazy Black" or "Ignorant Irish papists" being published in vile tracts and the "yellow press" to allow evil deeds, promotign strife that prevents fair wages/treatment etc, and other crookery to go on

go back to the Black Death in France, scumbag aristiocrats slyly spread the idea that the Jews spread the Plague, the Jews then got murdered by the mob, the aristocrats thus evaded the debts they had run up with Jewish moneylenders AND stole the land/property of their victims! Such evils, as I keep saying, today's scumbags can read about and repurpose for their own evil needs
CFS label = classic psy-ops, who use, tada, psychiatrists! (hey they even use 'em in torture sessions, obviously the Hippocratic Oath is toilet paper to some folks)

Really doesn't please me ot be so negative or harsh but it's "Reality" :/
not all politiicans or bureacrats are rotten, but the decent ones get drowned out by the tsunami of turds who are scumbags!

Alex
yeah, regarding the stupid waste, the British government for 30 odd years stymied unbiased enquiry into the Bloody Sunday shootings
when they finally did, the total bill for the enquiry came to over £250 million iirc!!
Would have been much cheaper ot admit error, pay compensation maybe prosecute anyone who went beyond what was needed, leave that to a civilian, unbiased court


Likewise, in our so-called "democracy", the UK government (both major parties!) has still actively prevented a Public Enquiry etc into the Camelford water poisoning disaster...why, after 30 years WHY still block investigation and redress?
that has to be classed as murder as for anyone who died after the cover up began, that's surely accessory to murder after the fact?, since they could have been treated for the poisoning!
But, no, Denial, Obfuscation and Prevention of the Truth Being Known, is Rule #1
and who had a hand in helping hushing that up, hm?

What kind of Human Being could cover that up, when a simple, dirt cheap treatment could have saved the victim's lives? (mineral water, no kidding!)

And the cost? 20+ that we know of have had a truly horrific and completely unecessary deaths
Plus, it is yet another item in the hugely growing list of wicked/stupid deeds that is completely undermining the validity and security of our Democracies.
How damn well dare we criticize some other nations for torture, assassinations, violently robbing people of their land and wealth, when our governments DO THE EXACT SAME THINGS!
jeesh

 

[BEG]

Now that CFSAC's over, what should we do?


We can complain, argue, make it personal, suggest, shoot each other down as we try to climb to the top of the heap and on and on because that's what we're best at doing. How does that make us any better than the committee? Where is the action? The unity? Well, I for one saw it when the panel of patient organizations gave their presentations. I was wowed beyond belief. Let's give a hearty thanks to Cort and his colleagues for bringing it to the table!

This may be the kernel of change we need. We get a few of these folks representing thousands of ME/CFS patients worldwide seated on the committee, and our voices are heard. Right now we have one patient advocate, albeit a very good one. There is power in numbers -- even for sick folks -- and we've yet to speak in unity.

 

[floydguy]

Even in the matter of leaving the meeting early, it may be that the matter was related to expense. I don't know where everyone was coming from, but I do know that flying across country or even a state or three is no small matter. The members are paid $200 per day for serving on the committee (I assume that's per day of meetings, not per day of the term all four years). $400 is generally not enough to pay for airplane tickets and a hotel in the Bethesda area. It's possible that some members may have another sponsor (say their university) which might help pick up the tab, but it's not a safe assumption that this would be true in all cases.

If most members feel they need to leave before 5:00 to catch a plane/train/bus/hitchhike then the meeting should end at 4:00 or 3:00. Or patient testimony or other items not related to voting, decision making, quorums, discussion etc should be taking place later in the day.

 

[SOC]

I think that the best thing we can do in the relative short term is something suggested by someone in another thread (sorry, can't find it at the moment ). We, probably through our patient organizations, should draft, in advance, suggested proposals/recommendations for the committee to vote on and distribute them to as many of the committee members as possible.

This would get the issues most important to us on the table. It would also give the committee members time to think, and maybe even do some advance research. We could do without so much of the yack that results from a bunch of people stumbling around lost in a mire without a map. It might also avoid the kind of issue quashing we saw at this meeting, "Well, I don't know if we, as a government agency, can do that." With luck, they might actually check on that type of thing before the meeting.

I think the committee members, in general, would appreciate that some of the work is done for them by people who actually know something about the illness. Their job would be mostly to vote on the expert recommendations (which actually is the job of a main committee) not hashing out details.

For those knowledgeable about meeting and committee management, this is akin to us, the patients and advocates, informally taking on the role of the expert subcommittee. An expert subcommittee does the research and hashing out of all the subtleties and brings to the main committee the proposal, already properly worded, for them to vote upon. The main committee can discuss it, but it's already clear, concise, and well-researched before they ever get it.

 

[CBS]

Act Up! proved that when the government does not really care (and they have clearly have shown that they don't, at least not enough to act) you need to make them care. You do that by making it more uncomfortable for them to continue doing nothing than the discomfort it will take to respond to your demands. I agree with those who are suggesting that this needs to be focused on those to whom the CFSAC reports; specifically Sibelius. Didn't Obama promise Robert Miller's wife that he would learn more about CFS? Is this what it looks like when Obama looks into something? What is Obama's word worth? Isn't this an election year?

 

[LaurelW]

Does anybody know when the recordings of the meeting, as well as the full patient testimonies, are going to be posted online, and the URL's?

Thanks!

 

[Seven7]

Does anybody have somewhere a detail list of the issues. Please give me link.

 

[Andrew]

If most members feel they need to leave before 5:00 to catch a plane/train/bus/hitchhike then the meeting should end at 4:00 or 3:00. Or patient testimony or other items not related to voting, decision making, quorums, discussion etc should be taking place later in the day.

Or they could book later flights.