Someone Had To Say It

A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE trial and UK research, and includes quotes from Mary Dimmock and myself, among others. Here’s what I had to say:

Spotila thinks NIH views patients as “a pain in the ass”. “Maybe we are, but are we more of a pain in the ass than other groups waiting 30 years for improvements?” she asks. “I’ve been sick for over 20 years, my entire productive time of life is gone. I’m stuck in my house and couldn’t have kids. But that’s just me and I’m not even the sickest person.

“The pain, disillusionment, anger and frustration comes from watching the government not deal with this problem for 30 years,” she says. “If they listened to what people have been through, it would change opinions.”

I might take some heat for saying that NIH sees ME/CFS patients as a pain in the ass. But I have personally experienced that vibe from some people at NIH (not all!). And I absolutely believe that NIH (and HHS) does not understand where our anger comes from, and how they have contributed to it through their own inaction and inattention.

But this interview was conducted months ago, when I was still fighting with NIH over the misplaced P2P comments (a story which is still not over, by the way). Now we have the potential for more action and funding at NIH. And Dr. Vicky Whittemore is quoted in the story, acknowledging:

“We need to hear the concerns of the community,” she says. “At different meetings, I’ve seen these patients get cut off; people be rude to them, roll their eyes. It’s so disrespectful.”

We are a pain in the ass; I have personally been a pain in the ass to NIH and HHS on occasion. But you know what? You have to be a pain in the ass to get attention. You have to make people uncomfortable to catalyze change.

We have an opportunity now to make good on that change. If NIH is willing to listen, then let’s talk. If Dr. Collins wants to “start fresh with the patient-advocacy community,” as Brian Vastag says in Gewin’s article, then I am all in. I’ve seen the impact of having a patient representative participate in the FDA Working Group. If NIH is willing to change its orientation towards ME/CFS research and the advocacy community, then I will not let this opportunity slip.

Like I said in my post on the NIH plan: Let’s do this. We’ve waited long enough.

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11 Responses to Someone Had To Say It

  1. cort says:

    Well said, Jennie – Of course they’ve seen us as a pain in the ass. We the disease – one of them – they obviously have wanted to go away. If they could just pretend that we weren’t there – as they’ve done for 15 years – maybe we’ll just fade away.

    But we didn’t. I think its fine to be respectful and aggressive – it’s entirely appropriate at this point. Bring it on NIH – let’s see what you’re going to do.

  2. janine says:

    “You just can’t beat the person who won’t give up.” – Babe Ruth

  3. Tina says:

    I wonder who they think is the pain. I am all for different types of advocacy and activism. Civil disobedience, such as blocking traffic, can be seen as being a pain to many. You got to make your target uncomfortable to motivate them to address your issue. Especially is this true when addressing the federal government and those who are salaried instead of voted in.

    But, as a wise and long-time advocate pointed out, often, the angrier folks cause the raucous that gets attention and then “the Suits” of the movement come behind them and negotiate for progress.

    But, no matter how strong your tactics, there should never be threats of bodily harm, attributing ulterior motives or lying or going after family. Why is that the case? Because doing so makes the activists/advocates the ones doing wrong instead of the ones being wronged. You lose support even from those who want the same thing you want. And you make your target look more moral, more reasonable, than you. You don’t win people over, and you turn your target unto the victim.

    It’s also more effective if the advocates/activists with many different tactics all agree on the action they want. This blog is titled “Occupy CFS” because it was started in the midst of the Occupy Wall Street movement. Now ask yourself: What did those occupiers want changed? During the time, they said it’s not for certain legislation or a certain action, but theirs was “a movement” for a new society with many things wanted. They opened up to anyone who wanted some change, any change, so they would get more involved and be more inclusive. In the process, their principles or goals were diluted. How was the government or Wall Street supposed to make them happy?

    How much more effective they would have been if they targeted one company or agency and made one demand that was morally easy to embrace because anyone with a sense of justice could see the change was needed. We just saw this in Missouri, where the black football players refused to play until their demand was met: university president retires or is fired because he tolerated racism too long. It worked, even after demonstrations and hunger strike didn’t. Now that they got that one, low-lying fruit done, they can take it further.

    The Occupiers could have made a simple demand, say this one to Congress: “Add $__ to bailout legislation for homeowners in addition to the bank bailouts.” Simple, clear, specific. Then they could all have been obstructionists with some being Suits actually talking to the Congress members until their united demand is met. It would have provided more motivation for continued efforts. And once they won that, they could have moved to the next target and demand.

    I also think it’s very harmful when the Suits and obstructionist activists aren’t talking or strategizing together for a united message and goal. When the obstructionist activists lose their trust and turn on the suits that are wanting the same just using a different method, it weakens their message. Someone has to keep a friendly, but assertive, relationship for when the target is changing their view. Someone needs to show them a safe way to make the change.

    And remember, those in negotiations, the Suits, may not be able to get all we want. Treaties between countries are often a matter of getting progress toward all you want, getting improvement, not getting all you want all at once. After you capture your gain, start working toward the next goal.

  4. anne says:

    Thank you foe being a pain in the ass. We need a hundred of you. Sometimes I think people who have not had the disease for decades rightfully still have hope and don’t want to be angry, it’s not good for us physically for one thing.

    But for those who are beyond hope just want justice done before we die. We’ve been screwed over too many times over 30 years. The proper way for us to be friends again would start with an apology for the years of abuse and end with a bucket full of cash and some centers of excellence.

  5. Sasha says:

    Thanks, Jennie. We do sometimes need to constructively make ourselves pains in the ass.

    In the PACE trial, which you mention, claims that CFS patients recovered after receiving CBT or graded exercise therapy were based on ludicrously low thresholds – for example, the recovery threshold for physical function was similar to that of the average for patients with Class II congestive heart failure.

    The petition calling for the retraction of these claims in The Lancet and Psychological Medicine has gained over 9,000 signatures in less than two weeks and has a target of 10,000.

    The brief, clear background pages to the petition make grim but fascinating reading.

    Emeritus Professor Jonathan Edwards of University College London has called PACE “valueless”.

    Please sign the petition and pass it on – we’re nearly there.

    Let’s sink this appalling piece of “science”!

  6. marcie myers says:

    Dear Jennie, I concur with you completely and understand your reason for writing this comment about a comment made in the past. And, like you, I feel that if someone is finally willing to listen consequent to many of us being “pain in the asses”, then let us do it in the most positive manner we can. I understand that we are in NIH’ s NINDS division now which should prove a good move and one requested for years now. And patients are quite taken with Vicki Whittemore’s obvious empathy and willingness to empower us which can only be for the better. I’ve been crashed but am about to begin writing Senator Lindsey Graham of South Carolina who is on the appropriations committee and therefore holds some influence. Hopefully, I can educate him and his staff as to our “plight” and gain some headway with the congressional funding of NIH to add to CFS/ME’s cofers annually. I share the anger that all of us have had but I must hold to hope. It’s all I have left. marcie myers

  7. Joe Landson says:

    In addition to her horrifying and insensitive public remarks at the recent CFSAC meeting, Dr. Kitt condescended to speak to me privately. She claimed no one was “interested” in our illness; praised Stephen Straus and claimed he had “proved” our illness wasn’t immune; and finally added that by keeping research levels low, the NIH is “protecting us from bad science”. These comments echo Dr. Gottesman’s equally absurd remarks at a previous meeting with patients, so apparently are widely held in the NIH bureaucracy. So even if Dr. Collins is sincere, these are the attitudes he has to fight through just to get to us. His own people seem determined to continue treating us with the contempt and disdain they always have. Until that changes, it will be hard to start a dialogue with anyone.

    • janine says:

      Hi Joe,

      Those were very insensitive remarks by Dr Kitt. Do you think she was trying to discourage you?

      To me, listening to your experience with Dr Kitt serves as a good example of why we ALL need to get behind and support Dr Collins. As you stated “these are the attitudes he has to fight through”.

      • Joe Landson says:

        Sadly, in some sick way, I believe Dr. Kitt was trying to “help”. But I don’t really know, and I can’t fathom this person at all.

        • Sasha says:

          I think you should let Dr Collins know about this directly, Joe (if you haven’t already). He may already know about this attitude but if he doesn’t, he needs to know who holds it so he can address it.

    • Roy says:

      Thanks for the reality check, Joe.
      “by keeping research levels low, the NIH is “protecting us from bad science”.”
      Wow, after all these years I thought I had heard them all.

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