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

[searcher]

I think the individual doctors/researchers try to standardize how they measure Anaerobic Threshold (it turns out this is more of an art than an exact science) but not necessarily how fast you ramp-up since they only care about effort and AT, not how long it takes patients to hit their limits.

 

[viggster]

I did my test at Workwell and they ramp up the resistance fairly slowly. My anaerobic threshold was ~78 bpm.

 

[viggster]

Well, this is the most roundabout way I've ever had an article in the Washington Post...but my former editor is going to republish the letter on their health blog and it might go in next Tuesday's print Health & Science section (yes, paper - 400,000 copies a day are still printed, and they reach an influential, if a bit older, audience in the Washington region).

 

[Sasha]

Well, this is the most roundabout way I've ever had an article in the Washington Post...but my former editor is going to republish the letter on their health blog and it might go in next Tuesday's print Health & Science section (yes, paper - 400,000 copies a day are still printed, and they reach an influential, if a bit older, audience in the Washington region).

That's fantastic news!

 

[searcher]

@Sasha - you were asking about the reach of the tweets and social media. I found a site that shows how many people have been reached, and as of this moment the count is 666,900 (and I think that's just based on the followers of journalists, not regular users)! You can see the breakdown and current count at http://muckrack.com/whoshared/?url=http://www.lastwordonnothing.com/2015/07/14/dear-dr-collins-im-disabled-can-the-n-i-h-spare-a-few-dimes/

 

[Bob]

Well, this is the most roundabout way I've ever had an article in the Washington Post...but my former editor is going to republish the letter on their health blog and it might go in next Tuesday's print Health & Science section (yes, paper - 400,000 copies a day are still printed, and they reach an influential, if a bit older, audience in the Washington region).

Oh, wow, that's great news. Congratulations Brian. Your letter has clearly touched people quite deeply. It's very unusual for a newspaper to publish something that's already been blogged. I'm so glad that your editor is supporting you, and our community, in this way.

 

[Sushi]

Well, this is the most roundabout way I've ever had an article in the Washington Post...but my former editor is going to republish the letter on their health blog and it might go in next Tuesday's print Health & Science section (yes, paper - 400,000 copies a day are still printed, and they reach an influential, if a bit older, audience in the Washington region).

Fantastic! Who'd have thought such a thing could happen. If you can think of any ways that we can help get your letter more widely circulated, please let us know. Some of us a tech dummies but can follow instructions! And....there are a LOT of us here.

 

[waiting]

@Scarecrow, thanks for the text that corrected me, re Lipkin. That's why I can't rely on my memory!

@Scarecrow, @Bob

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

I *knew* I read/heard it *somewhere*, but zero recollection where! Mindy, @mindykitei -- so excellent that you got that interview & quote directly from Dr. Lipkin in the first place.

It's still astonishing, isn't it.

 

[worldbackwards]

Given that this was referenced in the article, I thought it might be nice (if that's the word) to see those NIH spending totals in full.
http://report.nih.gov/categorical_spending.aspx

I gave a little laugh at first thinking that they only spent $6 a year on ME, though it isn't much more. But looking on the bright side, at least we whooped Batten Disease.

 

[ahimsa]

I just caught up with this thread.

A huge Thank you to Brian ( @viggster ) for writing/posting that letter! (I've already sent my thanks via twitter). I'm so glad it's going to be posted on the Washington Post blog and maybe even printed.

Also, another thank you to all the smart folks who added additional information here about twitter and facebook. I was so happy to read that comment from Rebecca Skloot. I've been a huge fan of Floyd Skloot for years, and not just his novels, such as Patient 002 (fictionalized account of early Ampligen trials), but also his poetry.

I wanted to add a quick comment about one thing regarding twitter mentions:

The following link will take you to a search page that shows you all new tweets mentioning 'brianvastag':
https://twitter.com/search?q=brianvastag&src=typd&vertical=default&f=tweets

If you use this link it lists all the tweets mentioning @brianvastag. Most of these mentions are positive. So it seems reasonable to mark them as Favorite (people use this feature differently but it's a bit similar to Like).

But some mentions might be negative. So, please be sure to read the tweet before marking it as favorite.

For example, at least one of the tweets links to that old BBC article about the supposed "torrent of abuse" being heaped on the poor old doctors in a "campaign of vicious abuse and intimidation" by patients. (I did not click on it, just looked at the summary - I know it has been discussed here on the forums a while back)

Just a suggestion. I know that when the brain is feeling foggy it's easy to just be on autopilot and "like" or "favorite" everything.

 

[viggster]

Well, the good Dr. Collins did read my letter and sent me a response an hour ago. He asked me to keep it private, which is fair. But I will say that his words conveyed to me that he does understand how serious the illness can be, and he made a pledge that gives me cautious hope that change may be afoot at NIH. We'll see...

 

[Sushi]

he made a pledge that gives me cautious hope that change may be afoot at NIH. We'll see...

The fact that he replied is a good sign in itself.

 

[Kati]

Well, the good Dr. Collins did read my letter and sent me a response an hour ago. He asked me to keep it private, which is fair. But I will say that his words conveyed to me that he does understand how serious the illness can be, and he made a pledge that gives me cautious hope that change may be afoot at NIH. We'll see...

That was quick!
Maybe possibly he could help changing the 6 millions figure allocated for 2016?

 

[Misfit Toy]

How excellent is/was that letter? Omg! You've got my vote!

@viggster -thank you..thank you!

 

[beaker]

Okay, I've made a twitter account, "Favorited" the initial tweet by Brian, and shared it. I think that's all I can manage right now Oh, and I'm ME_Valentijn - sort of like "My Valentine"

you now have a new follower : ) Congrats on setting up your account !

 

[leokitten]

Well, the good Dr. Collins did read my letter and sent me a response an hour ago. He asked me to keep it private, which is fair. But I will say that his words conveyed to me that he does understand how serious the illness can be, and he made a pledge that gives me cautious hope that change may be afoot at NIH. We'll see...

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.

 

[Valentijn]

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.

Take it public ... it's only going to apply pressure if other people see it.

 

[leokitten]

Take it public ... it's only going to apply pressure if other people see it.

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.

 

[Sasha]

Well, the good Dr. Collins did read my letter and sent me a response an hour ago. He asked me to keep it private, which is fair. But I will say that his words conveyed to me that he does understand how serious the illness can be, and he made a pledge that gives me cautious hope that change may be afoot at NIH. We'll see...

Congratulations, Brian! That sounds hopeful.

And as you wrote, it's not just an immediate injection of $$$, it's getting out of Women's Health and into an institution with a budget.

 

[Kati]

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.

@leokitten I think the difference in response is due to the fact that Brian has a fair amount of power, if you will, in the fact that his letter reached the heart of his fellow journalists. This is public support. Since it's gone viral very quickly, Dr Collins had to put out the fire rapidly as well. A mere public relation exercise.

In contrast, you are an employee, and the ties that bind you with the NIH director makes it uncomfortable for him to respond. He will have to be very considerate with his words and his response. You have probably also considered your words very carefully due to the fact that you are receiving a salary from this organization.

Essentially, it's complicated, but don't take it personally.

i think both approaches were important and hit in different ways but also simultanously.

The ball is in the court of the NIH director.

Thank you both,
I think it was a great move.