Blog: "My Comment to MEAction’s #MillionsMissing Protest Demands"

[Nielk]

And the problem with advocating for nonrealistic goals is that you achieve nothing.

Everyone seems to agree that we should advocate for $250 million and t makes sense because that is what is fair and equitable. Yet, how realistic is that? Historically, NIH has spent between $3 and 7 million on ME and they keep telling us time and time again that there is no budget for more. They tell us that it is all dependent on how many submissions they get and from those only a small percentage get approved.

Does that mean that we should demand only $10 million in research because that is realistic?

We should demand what is right.

 

[caledonia]

And the problem with advocating for nonrealistic goals is that you achieve nothing.

Such a sad attitude about life.

 

[JayS]

For political purposes, we want broad criteria. We cannot say that 2.5 million Americans have this illneed, that is causes this much economic damage to leave patients untreated, and that we need $250 million funding per year without using some broad criteria, because there's no way that so many patients have CCC or ICC ME.

For research purposes you want strict criteria because they make it easier to find abnormalities.

Demand SEID criteria in clinical practice, and CCC or ICC in research, with further refinement once more is known or a practical biomarker appears. That's the smart thing to do.

Disagree. I've been arguing this for years. If you argue for broad criteria you are acknowledging to anyone you can get to listen that the government numbers and stats are correct. How that's going to lead to CCC/ICC cohorts when it's near impossible to get anyone to listen to, let alone understand, the criteria issues, seems to me to be impossible. We've already seen NIH, whether accidentally, mistakenly, intentionally, or whatever, try to jam Reeves Criteria into the Nath study. They've walked it back, but can anyone really answer what that means at this point?

Although I have reason to believe our numbers have grown in recent years...let's keep in mind that the 1 million number comes from Lenny Jason's 0.4% prevalence in a 1999 paper on Fukuda. When I see 2.5 million or 4 million or 8 million I find it disturbing. If it's even 1 million that means in any random gathering of 325 people there's one with CCC/ICC ME, and that just doesn't make any sense to me.

The truth is, we deserve at least $100 million in funding, even if there are less than 500,000 of us. I don't know what the true number is. Maybe it really is a million by now, though I kind of doubt it. Regardless, I see no place to argue for broad criteria, period, end of story. Just my opinion. Mind you, I don't think the IOM report is entirely useless; it provides good arguments against those who deny the disease even exists. But there are no exclusions in the criteria and that opens the door for horrible misuse in research, never mind that it was supposed to be clinical-only anyway. It's already been used in research. I remember arguing at the time with people who said this wouldn't happen...

 

[Snowdrop]

any random gathering of 325 people there's one with CCC/ICC ME, and that just doesn't make any sense to me.

Uh, don't have much to say here other than it's called an 'invisible illness' because even if people are not bed/housebound they are so busy taking care of essential needs that they are absent from most group activities and indeed some subset only manage by working from home.

Edit to add: IIRC the point from MEaction was that there are different venues for where we ought to go with different demands. It's increasingly hard for me to think but this seems reasonable. The general public should be made aware of our situ, while the medical bureaucrats need to be told we will NOT accept the label cfs.

Sorry if this might be missing the point. I can't go back over the whole thread.

 

[JayS]

it's okay @Snowdrop I'm not trying to be terribly forceful about this. I don't expect people to agree with me. Over the years it seems few have. I do find what ME Action is doing to be intriguing, and clearly there are some good people with some good ideas and they're making strides we haven't seen in decades, if ever. When I say any random subset of 325 people I don't mean it literally, more in the way of having a sense of what the prevalence represents. We've long had people in the government, from Straus on down, who were hostile to us and wanted to discredit us and minimize our plight. If there are still such people than my feeling is that not protesting the prevalence the government suggests is a missed opportunity.

I'm sure there was a time to raise this with ME Action but I was mostly out of commission for an extended period. It's counterintuitive to say that we're better off being thought of as being less in number, than more. But the higher the number, if it's not accurate and includes patients defined by broader criteria, the more likely it is that inappropriate and harmful suggestions will follow. Just because PACE was somehow botched, in terms of showing poor efficacy of CBT & GET with an Oxford cohort you would've expected those to work well on, doesn't mean the next CBT/GET trial can't or won't show results that can and will harm us well into the future. Maybe the tide is shifting and the attitudes of the people in government towards us have changed. I haven't seen enough to come around to a point where I trust them.

 

[flybro]

Experience on both sides of the pond makes it highly unlikely we will trust our 'so called' 'authorities or experts'.

AND neither should we.

 

[Snowdrop]

If there are still such people than my feeling is that not protesting the prevalence the government suggests is a missed opportunity.

My opinion of government attitudes is that the same players are out to obstruct as per usual but that people who never paid much attention are now noticing and that is making a difference. The obstructionists no longer can do all this in the shadows as it were.

As to the issue of absolute numbers of sufferers it would be good to have some way of accurately assessing this.
Although increasingly I am personally finding it difficult to follow the discussion with regards to how best we are represented meanwhile.

I am immensely grateful for the work MEaction has so far accomplished. I suspect we have not seen the full benefits from what has been done so far as they are still happening.

It has been frustrating to me to see the continued use of the term cfs and I am on record for saying this before.
While I consider it a priority I at the same time see how it is not something to be pursued in a public education situation. How the use of ME impacts the numbers and how we are dealt with otherwise is something I really don't have any ability to assess but it's always good to be able to have these discussions as they are necessary.

I would only hope that they can be done without tearing down the good work done out of a fit of pique that everyone isn't willing to all fall in line.