Dear Dr Collins, Can the NIH spare a few dimes? by ex Washington Post journo with ME/CFS

[Valentijn]

I appreciate your feelings about this, it's just not easy for me to go public without potentially doing some serious harm in my situation and I think people need to respect that.

Yup, I know that's a big concern. Even if you never go public with your letter, and never get a response, at least it helps give context to the response which the reporter got: their concern is their public image, and not simply doing the right thing. They'll act only when forced to.

The lack of response is disappointing, but it provides useful information to the ME community in planning their approach to deal with the people and agencies involved.

 

[Scarecrow]

Thank you for clarifying the source (how did you find it?!)

Oddly enough, although I can no longer take in intensive information, the odd bits and pieces that do make it through my thick skull really get stuck there.

 

[halcyon]

He asked me to keep it private, which is fair.

Understandable and expected, but fair is not the word I would use. Every single patient with this disease deserves a response. We deserve an explanation. The IOM report has been out for 5 months. The P2P report has been out for one month. All we've heard from the NIH is crickets.

 

[leokitten]

Yup, I know that's a big concern. Even if you never go public with your letter, and never get a response, at least it helps give context to the response which the reporter got: their concern is their public image, and not simply doing the right thing. They'll act only when forced to.

The lack of response disappointing, but it provides useful information to the ME community in planning their approach to deal with the people and agencies involved.

I think I didn't explain clearly in the PR thread with my letter to Dr. Collins that he is the first and only person at the NIH that I've revealed to that I have ME/CFS and all the other details. My direct supervisor who is a director of a center at the NCI (where I work) as well as my coworkers do not know any of this information, they only know that I've had health problems.

 

[Sasha]

I think I didn't explain clearly in the PR thread with my letter to Dr. Collins that he is the first and only person at the NIH that I've revealed to that I have ME/CFS and all the other details. My direct supervisor who is a director of a center at the NCI (where I work) as well as my coworkers do not know any of this information, they only know that I've had health problems.

I think you're wise to keep it to yourself. When I went into remission and was able to work again, I was open about what had been wrong with me (in the sense that if I was asked, I didn't lie, though I didn't volunteer the information). I seemed to get a good reaction but after I left (unable to keep working), one of my colleagues told me that another colleague had told everybody that ME was a psychosomatic illness and that it had been all in my head.

I don't know how many believed her but it's not pleasant to imagine how many did. And because she never said this to my face, and because I never know who'd she'd told, I never had the opportunity to challenge it.

 

[Bob]

On my front, after writing my letter to him I've gotten complete silence, no response, not even a message that it's been received. It's sad that an employee at the NIH who's killing himself to still work and do well at his job while having this disease gets zero response from the director, but I guess that's the way the world works.

Sorry to hear you haven't had a response to your great letter, leokitten. It's obviously disappointing. But you've done a great service for all of us whether you get a response or not. As others have said, every bit of advocacy helps build a picture, and puts extra pressure on the authorities. Thanks so much for taking the risk, and for writing such a great letter for the benefit of our whole community. We totally understand that you can't go public. We don't expect you to do anything that puts your position at any sort of risk.

 

[Nielk]

The fact that leokitten has not received a reply yet Brian did is very discincerting. It is obvious that the heat was on Collins was to reply and reply quickly due to the quick media storm about Brian's letter.

It is obvious to me that Collin"s "secret@ reply to Brian is self serving. Collins wants to dampen the media buzz. As if the matter has been "settled".

Had Brian's letter remained private, I would have understood the wish for the reply to remain private.

We can publish a book with all the replies from HHS, CDC and NIH full of empty promises.

I do believe though that both of these letters were excellent and uniquely powerful letters. They can only add to the pressure for Collins to do something. It is also an assurance that patients eyes are in him.

His only appropriate and acceptable reply is action.

 

[jimells]

Well, the good Dr. Collins did read my letter and sent me a response an hour ago.

Perhaps the cost of the current policy is getting a little too high. One can not out-ski an avalanche forever...

 

[Kati]

Patient activist Joe Landson has been doing a 1 man protest at NIH headquarters this week, 2days in a row now.

I have borrowed the pictures from Facebook to post them here, and I have also shared them on twitter to show Francis Collins (@NIHdirector).

Actions like this are synnergic to the recent open letters discussed here.

You can help by sharing on twitter and making sure you tag Dr Collins and your member of Congress.

 

[viggster]

I'm really glad Brian that you got such a positive response from Dr. Collins and I hope he means what he wrote to you.

On my front, after writing my letter to him I've gotten complete silence, no response, not even a message that it's been received. It's sad that an employee at the NIH who's killing himself to still work and do well at his job while having this disease gets zero response from the director, but I guess that's the way the world works.

Well, that stinks. I'm sorry he hasn't responded. I know how hard it is to keep working while sick. You might want to try contacting Kathy Hudson as well...she's in a powerful position and may be more responsive.

And just to let you know, the reason my letter got to Dr. Collins so quickly is because I basically called in a favor with the head of NIH communications, whom I worked with many years ago.

 

[ahimsa]

Patient activist Joe Landson has been doing a 1 man protest at NIH headquarters this week, 2days in a row now.

Thanks for those photos, those are great!

I tweeted one photo (w/twitter mentions of NIH Director + my senators and congress rep) but I forgot to ask you - Does the patient want his name mentioned in tweets? Or be anonymous?

I will definitely credit him with full name if that's his preference. Thanks.

 

[leela]

I wonder if leokitten's letter could be circulated as an "Open Letter to Francis Collins" via the current buzz around Brian's Letter?
I'm not a twitterer or FBer, but is it possible for those who have tweeted/reposted links to Brian's blog tweet a link to Leokitten's letter as well?

 

[searcher]

Hi @leela- I think that's a great idea. The only issue is that @leokitten's letter is currently on a members-only page that is only accessible to people logged into Phoenix Rising. Since he is not public with his illness, we should confirm with him about whether it is ok to tweet the link or copy the letter. Are you ok with people sharing the letter @leokitten? I definitely understand if you are not.

 

[alex3619]

All we've heard from the NIH is crickets.

Crickets would be an improvement on the status quo.

 

[Kati]

Thanks for those photos, those are great!

I tweeted one photo (w/twitter mentions of NIH Director + my senators and congress rep) but I forgot to ask you - Does the patient want his name mentioned in tweets? Or be anonymous?

I will definitely credit him with full name if that's his preference. Thanks.

Will check with him, but it might take a while before he responds, due to crashing.

My best guess is he would like the photo shared more than being given credit especially on twitter at 140 characters.

 

[beaker]

Hi @leela- I think that's a great idea. The only issue is that @leokitten's letter is currently on a members-only page that is only accessible to people logged into Phoenix Rising. Since he is not public with his illness, we should confirm with him about whether it is ok to tweet the link or copy the letter. Are you ok with people sharing the letter @leokitten? I definitely understand if you are not.

@leokitten has already stated ( go a page back) that he does not wish to share openly:

I appreciate your feelings about this, it's just not easy for me to go public without potentially doing some serious harm in my situation and I think people need to respect that.

I know that many others here on PR who worked while having this disease would agree because terrible things happened to them at their workplace after coming out that they had this illness. If I wasn't working anymore because I became disabled then that would be a different story and the risks wouldn't be there.

You know from my posts I depend on my job for my livelihood, I have no safety net to fall back on. For me at least it was a huge step just to write this letter to Dr. Collins and have him and his office know.

 

[Kati]

Joe said you could share all you like, so go right ahead. Make this viral.

 

[leokitten]

Hi @leela- I think that's a great idea. The only issue is that @leokitten's letter is currently on a members-only page that is only accessible to people logged into Phoenix Rising. Since he is not public with his illness, we should confirm with him about whether it is ok to tweet the link or copy the letter. Are you ok with people sharing the letter @leokitten? I definitely understand if you are not.

@leela @searcher I really apologize if I disappoint anyone, but at this point for the reasons I've written I'm not comfortable going public because there is a very real possibility that it could do serious harm to me at my workplace. I put a copy of the letter I emailed at work to Dr. Collins in the PR Members Only area as a good gesture to privately inform people of my attempt to provoke change within my organization.

Brian (@viggster) and I know each other personally starting back in 2013 when he lived in Washington, DC and he knows my situation. We met and got to know each other after meeting online here on PR and he knows I work as a scientist at the NIH/NCI. It was a nice moment of serendipity that we wrote similar letters one after the other.

 

[leela]

I'm so sorry @leokitten, I had already forgotten that you didn't want the publicness. purely a brainflam moment on my part, i didn't mean to make you feel pressured, and I know Searcher wouldn't either. i also have to keep it very private for similar reasons. So no apologies needed, it was a moment of enthusiasm, making the connection that you are also a scientist, and gung-ho override of facts this dim brain had only recently read You are so brave to have written and sent it.

On further pondering, it occurred to me you may be getting an answer sooner rather than later after all this buzz. Dr Collins and the agency are having a bit of spotlight thrown atm. So the serendipity may continue to parlay

It's one of the things that's most frustrating about this stupid illness, is having the random memory span of a gnat.

 

[Bob]

It's one of the things that's most frustrating about this stupid illness, is having the random memory span of a gnat.

Tell me about it!