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

[AndyPR]

Blog post by Gabby Klein. Posting this on the basis of free speech. Personally I think this misses the wood for looking at just one tree but a number of people seem to feel the same way as the blog post, so I'm posting for that reason.

The organization, MEadvocacy , their supporters and independent advocates who advocate for the disease Myalgic Encephalomyelitis (ME) and for the criteria CCC and ICC represent a significant percentage of the ME community. According to Jason’s latest study (as shown below), the majority of the community prefers the name Myalgic Encephalomyelitis (ME) over CFS, ME/CFS or SEID and selects the CCC and ICC criteria over the IOM criteria.

Therefore, MEadvocacy and independent advocates such as myself, have repeatedly communicated the name and criteria preferences to MEAction to include them in the protest demands but have been cut out of the process time and time again. Additionally, MEadvocacy and their supporters were excluded when MEAction met with high-level staffers at HHS recently – again shutting out a significant voice in the ME community.

https://relatingtome.net/2016/09/25/my-comment-to-meactions-millionsmissing-protest-demands/

 

[Valentijn]

MEAdvocacy doesn't take a productive approach to pretty much any issue.

 

[Sasha]

The organization, MEadvocacy , their supporters and independent advocates who advocate for the disease Myalgic Encephalomyelitis (ME) and for the criteria CCC and ICC represent a significant percentage of the ME community.

I've brought this point up on the forum before - they can't back that claim up. There is no "community". There are 17 million patients worldwide. There are maybe a few tens of thousands online and networked up. How many members has MEadvocacy got? And what's that as a percentage?

I understand that some people want name issues prioritised at this point but a lot of other people have different views.

Edit: my bad - it's not "name issues" but "definition issues". Prioritisation point still applies, however.

 

[halcyon]

I understand that some people want name issues prioritised at this point but a lot of other people have different views.

It's not simply name issues, it's criteria issues. Saying it's just about a name is a massive trivialization.

 

[Sasha]

It's not simply name issues, it's criteria issues. Saying it's just about a name is a massive trivialization.

Fair enough - didn't read that correctly - but my point that MEadvocacy are claiming to represent a "significant percentage" and that their priorities and those of others can legitimately differ stands.

 

[Nielk]

Fair enough - didn't read that correctly - but my point that MEadvocacy are claiming to represent a "significant percentage" and that their priorities and those of others can legitimately differ stands.

First of all, let me clarify - this comment was written by myself - not MEAdvicacy. I am an independent advocate now.

I never said that others stands are not legitimate.

I stated that the voices of those who advocate for ME per the CCC and ICC was not considered on the same scale as those who have differing views.

Their input was not only not sought, but their input was denied - since before the May protest till today.

 

[TiredSam]

@Nielk hope you don't mind me asking but are you disqus_Rv8tqVZbOP by any chance?

 

[Nielk]

@Nielk hope you don't mind me asking but are you disqus_Rv8tqVZbOP by any chance?

I have no idea what that is?

 

[snowathlete]

Maybe ME Advocacy's view wasn't sought, and their priorities not adopted, because there isn't wide enough support for those things among the community. Many don't see ME Advocacy's focus as representing realistic or productive goals.

 

[Nielk]

Maybe ME Advocacy's view wasn't sought, and their priorities not adopted, because there isn't wide enough support for those things among the community. Many don't see ME Advocacy's focus as representing realistic or productive goals.

That might be your though and it seems that's the popular thought here on PR, but it is not the case in the broader community.

You, personally, might not agree with the stand of advocating for ME as per CCC or ICC, but polls taken of the broader community do not agree with you. The latest one from Jason has just been published.

MEAdvocacy has thousands of supporters and many independent advocates in the US and internationally agree with their stand.

Additionally, MEAction said they wanted our input but their action (they had many months to do so) did not follow their promise.

If MEAction would choose this stand for their org, I would have no problem with it. Just like MEAdvocacy and independent advocates take a specific stand, they certainly can choose their own.

But, the demands state the following: "patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services and its agencies — especially the NIH and CDC — to implement the following list of demands."

The connotation that the community has agreed on these points.

 

[Nielk]

It is also telling to me that members here are stating that MEAdvocacy and their supporters are negative - just because they don't agree with your own stand.

Everything is relative from your own position. I don't state that those who oppose the name ME or the criteria of CCC or ICC. I will probably debate the merits of your position, but will not say that you are just negative.

 

[Nielk]

This is also why patients and advocates who share my stand in general will never come on here to post. I didn't want to post my comment here - someone else did.

I knew that it would be automatically slammed - regardless of its merits.

 

[TiredSam]

It's an identity used by someone who sometimes comments on online articles, eg

They normally express the same views that you're expressing regarding name issues, so I just wondered if it was you?

 

[Nielk]

It's an identity used by someone who sometimes comments on online articles, eg

View attachment 17458
They normally express the same views that you're expressing regarding name issues, so I just wondered if it was you?

No - it's not me.

 

[snowathlete]

That might be your though and it seems that's the popular thought here on PR, but it is not the case in the broader community.

You, personally, might not agree with the stand of advocating for ME as per CCC or ICC, but polls taken of the broader community do not agree with you. The latest one from Jason has just been published.

People wanting ME/CCC/ICC is not the same as people thinking that advocating for those things is a realistic goal.

There is no reliable way to measure the overall community anyway. My comment was about how people percieve ME Advocacy Org in terms of its goals. What I said is how most people I speak to see ME Advocacy Org. Obviously, who I engage with is not representative of the community as a whole either. But what I'm saying is that there are a lot of people who see it like this and from everything I see on blogs, social media and what other advocates and advocacy orgs focus on as well, it seems what I raise as a possibility above may be right, so it may be the case in the broader community that many feel this way. There is really no way to measure it and doing so wouldn't achieve much anyway.

I was just raising what I think is the reason to the issue raised. ME Advoacy Org think their view about ME/CCC/ICC should have been a focus of the protests. That hasn't received take up. I simply gave my viewpoint on why that was. Whether you decide to ignore that or if you decide I might have a point is entirely up to you.

 

[snowathlete]

But, the demands state the following: "patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services and its agencies — especially the NIH and CDC — to implement the following list of demands."

The connotation that the community has agreed on these points.

On that point, there is no such thing as a united community, so it's a question of level of support. I agree such statements have to be made careful and fairly. If an advocacy group has broad support, in this case for the items on #ME Action's list, then it's acceptable, if not then it isn't. Does ME Advocacy Org disagree with the list of demands? I know they wanted ME/CCC/ICC stuff in there, but that is a different issue.

 

[snowathlete]

It is also telling to me that members here are stating that MEAdvocacy and their supporters are negative - just because they don't agree with your own stand.

Everything is relative from your own position. I don't state that those who oppose the name ME or the criteria of CCC or ICC. I will probably debate the merits of your position, but will not say that you are just negative.

For some, negatively may not be about the advocacy aim so much as the approach?

 

[Nielk]

What I said is how most people I speak to see ME Advocacy Org.

I don't know if you follow the politics here in the US. It's probably similar in other countries as well. Members of one party believe that they are so right and how could anyone not agree with them. They only listen or read papers that talk about that side of the debate and they hang around with those who share the same views. Then, when they hear the results of the polls, they are shocked to see that just about the same amount of people agree with the opposing view.

I was just raising what I think is the reason to the issue raised. ME Advoacy Org think their view about ME/CCC/ICC should have been a focus of the protests.

MEadvocacy, their supporters, and independent advocates who shared that view wanted their voice to be heard, It wasn't sought when a couple of advocates created the demands and it was repeatedly ignored when they tried to give input.

 

[snowathlete]

I don't know if you follow the politics here in the US. It's probably similar in other countries as well. Members of one party believe that they are so right and how could anyone not agree with them. They only listen or read papers that talk about that side of the debate and they hang around with those who share the same views. Then, when they hear the results of the polls, they are shocked to see that just about the same amount of people agree with the opposing view.

I basically pointed that out in the next sentence Nielk.

 

[JayS]

@Nielk hope you don't mind me asking but are you disqus_Rv8tqVZbOP by any chance?

This is almost certainly an advocate who is a fairly single-minded poster, who for years has posted on one single specific aspect of this issue and almost nothing else. I don't know why, but for some reason I'd rather not name names, and I could be wrong (though I'm about 100% sure I know who this is). It's definitely not Nielk. It's someone more aligned with Hummingbirds, but who's been posting the same message for years and years, having driven a once-cogent point well into the ground. It's very familiar--all this stuff about 'phony groups' and 'ME/CFS fraudsters' and how ME patients want an ME diagnosis. There have been some sad but somehow entertaining exchanges with a certain survivor of the initial Incline Village outbreak and this person, with the Incline Village survivor taking the position that CFS was supposed to represent ME, and therefore in theory there should be nothing wrong with that label, with the problem being that it was hijacked by Straus and the Holmes committee.

Me, I like the idea of ME vs. CFS as much as the next person who has much of an idea about this issue, for the obvious reasons, but with one caveat: if you changed, overnight, everyone's diagnosis from CFS to ME who actually has Ramsay ME, I question what that would mean for people whose entire medical lives are based on the CFS diagnosis, whose disability and other benefits exist solely because of that diagnosis. People want an ME diagnosis? That's what your anon has written, millions of times. But what good is it going to do in the US where nobody knows what it is? Get you kicked off disability and unable to have insurance pay your medical bills, as likely as anything else, I'm afraid. But I don't know, and nobody knows, really. But I'm not sure it's worth taking a chance on without strict assurances that this would not be the case, and we can't get the government to agree on anything about this disease. If we're moving towards SEID, that's probably one step further from ME.

As for Nielk, I haven't followed the issue closely, but I'd tend to trust her instincts. I plan, weather permitting, to be at the Millions Missing protest on Tuesday, but if she's raising an issue here, I want to take a good look at it.