NIH Letter Campaign

[George]

Hey all, I have given up on the CDC and decided to beat on NIH for a while. (big grins) I am sending the letter below to Dr. Mangan on November 1st both e-mail, snail mail and fax but I could use a bit of help please.

1st -double check grammar and spelling please. (understand that this is my letter and I'm not going to change the content, Big grins, but feel free to copy, paste and change and send your own!)

2nd- I want to list 20 of the most useful test and really beat on him about those test over the next say 5 or 6 months. (At least till XMRV becomes the most useful test. Grins) I could really use your input for the list of test. Pretty please. (Next up!)

3rd - I would like to send not just to Dr. Mangan but to other member of the NIH as well as many as possible. A list of those you think might be most important and an address would help a lot and if a few people here and there don't mind doing the finding and posting it would save me a lot of energy and I would deeply appreciate it. (still to do)

I've posted the letter below and hope that some of you can help a bit here and there between now and next Monday. Thanks guys you all are the best. (Licks and slurps)

 

[George]

The Letter in Question

ETA: changed to reflect the most excellent work of Sasha and UT!

November 1st, 2010

From: George R. Mutt
Xxx E xxxxx street xxx xx
Xxxxx, Texas xxxxx

To: Dennis Mangan, PhD
Acting Co-Chair, Trans-NIH CFS Research
Working Group, OD, NIH
National Institutes of Health
Executive Plaza South, 150A
6120 Executive Boulevard
Bethesda, MD 20952

Dennis.Mangan@nih.gov
301 402-1770

Re: Four simple steps to help ME/CFS patients

Dear Dr Mangan,

Allow me to begin by complimenting you on your excellent presentation at the recent CFSAC meeting of October 13th, 2010. You brought a much needed energy to the table as well as respect for the large patient community and useful ideals and information. It is in the spirit of usefulness that I am writing you today to suggest four simple steps that can help both your organization and the patient community.

1. Change the name of the illness on your Trans-NIH WG website to ME/CFS. This small step alone will open up opportunities for patients to begin a more earnest dialog with their physicians in the coming year.

2. Use your website to encourage doctors to utilize the ME/CFS Working Group case definition Carruthers et al. 2003, in order to more accurately pinpoint ME/CFS cases. This reorganization of the patient population by doctors will help reflect the true numbers of individuals affected and allow doctors to look more closely at cases that have been mislabeled allowing many patients a fresh opportunity for correct diagnosis and treatment. In the future it will allow researchers to more easily identify large groups of patients for clinical trials and make clean subgroups possible.

3. List the specific tests outlined in Carruthers et al, 2003 on your website and encourage doctors to run those tests when indicated by symptoms in the patients. Doctors today follow the older guidelines which specifically state that running tests is a waste of resources and of no particular usefulness. However, doctors respond to empirical evidence not anecdotal information. By encouraging doctors to run the appropriate tests will give depth to the illness. In addition to this doctor/patient benefit there is the added benefit of grouping and subgroup patients more efficiently for later research purposes. This will save time and resources later.

4. Change the web address and banner of your current website to remove mention of the Office of Women’s Health. While I am deeply grateful to any department for sponsoring this much under-served population, the stigma that is attached to ME/CFS has led to inaccurate reporting of numbers in regards to the patient population. Case in point: my ex-husband has been diagnosed as having Chronic Lyme Disease even though he has never been bitten by a tick. However, his doctor feels that CFS is a women’s illness and that, therefore, my ex-husband must have Chronic Lyme Disease instead. Making this simple change will begin the process of removing the mythology regarding ME/CFS and lead to a more accurate reporting of the patient population.

We loose members every year to hopelessness. That’s why I am challenging you, Dr. Mangan, to make these changes to the website not later than January 15th 2011. While changes may take time internally, you can provide new hope to thousands of severely ill people both here in the US and abroad with a few simple changes provided in a timely manner. I look forward to your roll in ME/CFS in the future and welcome aboard.


Sincerely,



George R. Mutt



CC: Francis Collins
Kathleen Sebelius

 

[Sasha]

Hi George - great idea but where's the letter? I can't see it!

Have thought for ages it would be good to insist on getting the tests that would show we've got a real illness (would certainly be a huge help in the UK). I wish an ME/CFS specialist had such a list that we could all point to and show was based on good research.

ETA: Oh! I see it now. I was too impatient!

 

[Sasha]

Great letter - am working on it now in a nitpicking manner on a few typos & whatnot (I have some experience in copy-editing - it's our job to be annoying!).

 

[Sasha]

Told you I would be nitpicky - you may well not spot the difference because it was already in great shape but I've changed a few things to lower case, taken out some unnecessary periods (Dr., M.E., etc.) and done another few twiddly bits. I started off bolding them so you could see but then thought that might give you copy/paste problems down the line so stopped. Hope I haven't introduced any UK style weirdness.

Just another few things: para. 1, how about "spirit of usefulness" instead of "vein"?

Point 2: infected or affected? "Infected" suggests we're certain of an infectious cause.

Point 3: I didn't understand this sentence so didn't dare edit in case I change your meaning: "By encouraging doctors to run these test were indicated they come to understand the depth of the patient illness thereby providing better quality care for that patient."

Hope this is helpful! I stopped doing much of this kind of work years ago because it makes one peevish after a while! Maybe others can also check it over for anything I have missed.

Really a great letter - I love that you gave him a deadline.


***************
Re: Four simple steps to help ME/CFS patients

Dear Dr Mangan,

Allow me to begin by complimenting you on your excellent presentation at the recent CFSAC meeting of October 13th, 2010. You brought a much needed energy to the table as well as respect for the large patient community and useful ideals and information. It is in the vein of usefulness that I am writing you today to suggest four simple steps that can help both your organization and the patient community.

1. Change the name of the illness on your Trans-NIH WG website to ME/CFS. This small step alone will open up opportunities for patients to begin a more earnest dialog with their physicians in the coming year.

2. Use your website to encourage doctors to utilize the ME/CFS Working Group case definition (Carruthers et al. 2003, see attached) in order to more accurately pinpoint ME/CFS cases. This reorganization of the patient population by doctors will help to more accurately reflect the true numbers of individuals infected and allow doctors to look more closely at cases that have been mislabelled allowing many patients a fresh opportunity for correct diagnosis and treatment. In the future it will allow researchers to more easily identify large groups of patients for clinical trials and make clean groupings and subgroupings possible.

3. List specific tests (see attached list of most useful tests) on your website and encourage doctors to run those tests when indicated by symptoms in the patients. Most doctors today follow the older guidelines which specifically state that running tests is a waste of resources and of no particular usefulness. However, doctors respond to empirical evidence not anecdotal information. By encouraging doctors to run these test were indicated they come to understand the depth of the patient illness thereby providing better quality care for that patient. In addition to this doctor/patient benefit there is the added benefit of grouping and subgrouping patients more efficiently for later research purposes. This will save time and resources later on as individual doctors and patients can more accurately determine which tests will be beneficial and which ones unnecessary.

4. Change the web address and banner of your current website to remove mention of the Office of Women’s Health. While I am deeply grateful to any department for sponsoring this much underserved population, the stigma that is attached to ME/CFS has led to inaccurate reporting of numbers in regards to the patient population. Case in point: my ex-husband has been diagnosed as having Chronic Lyme Disease even though he has never been bitten by a tick. However, his doctor feels that CFS is a women’s illness and that, therefore, my ex-husband must have Chronic Lyme Disease instead. Making this simple change will begin the process of removing the mythology regarding ME/CFS and lead to a more accurate reporting of the patient population.

The holidays are nearly upon us and after the holidays a very dark time for our community. We lose many members to despair and hopelessness after the holidays. That’s why I am challenging you, Dr Mangan, to make these changes to your website not later than January 15th 2011. While changes may take time internally, you can provide new hope to thousands of severely ill people both here in the US and abroad with a few simple changes to your website in a timely manner. I look forward to your meeting this challenge.

 

[urbantravels]

Allow me to begin by complimenting you on your excellent presentation at the recent CFSAC meeting of October 13th, 2010. You brought a much-needed energy to the table, as well as respect for the large patient community and useful ideals and information. It is in the spirit of usefulness that I am writing you today to suggest four simple steps that can help both your organization as well as the patient community.

1.- Change the name of the illness on your Trans-NIH WG web site to ME/CFS. This small step alone will open up opportunities for patients to begin a more earnest dialog with their physicians in the coming year.

2.- Use your web site to encourage doctors to utilize the ME/CFS working group case definition (Carruthers et al 2003, see attached) in order to more accurately pinpoint ME/CFS cases. This reorganization of the patient population by doctors will help to more accurately reflect the true numbers of individuals affected and allow doctors to look more closely at cases that have been mislabeled, allowing many patients a fresh opportunity for correct diagnosis and treatment. In the future it will allow researchers to more easily identify large groups of patients for clinical trials and make clean groupings and sub-groupings possible.

3.- List specific tests (see attached list of most useful tests) on your website and encourage doctors to run those tests when indicated by symptoms in the patients. Most doctors today follow the older guidelines, which specifically state that running tests is a waste of resources and of no particular usefulness. However, doctors respond to empirical evidence, not anecdotal information. By encouraging doctors to run these tests where indicated, they come to understand the depth of the patient illness, thereby providing better quality care for that patient. In addition to this doctor/patient benefit there is the added benefit of grouping and sub-grouping patients more efficiently for later research purposes. This will save time and resources later on as individual doctors and patients can more accurately determine which tests will be beneficial and which ones unnecessary.

4.- Change the web address and banner of your current web site to remove mention of the Office of Womens Health. While I am deeply grateful to any department for sponsoring this much under-served population, the stigma that is attached to ME/CFS has led to inaccurate reporting of numbers in regards to the patient population. Case in point: my ex-husband has been diagnosed as having Chronic Lyme Disease even though he has never been bit by a tick. However, his doctor feels that CFS is a womens illness, therefore my ex-husband must have Chronic Lyme Disease instead. Making this simple change will begin the process of removing the mythology regarding ME/CFS and lead to a more accurate reporting of the patient population.

The Holidays are nearly upon us, and after the holidays a very dark time for our community. We lose many members to despair and hopelessness after the holidays. Thats why I am challenging you, Dr. Mangan, to make these changes to your web site not later than January 15th 2011. While changes may take time internally, you can provide new hope to thousands of severely ill people both here in the U.S. and abroad with a few simple changes to your web site in a timely manner. I look forward to your meeting of this challenge.


Sincerely,



George R. Mutt


Attachments 2: Carruthers et al 2003, pdf
List of most useful tests, doc file

CC Francis Collins

General notes:

- ME/CFS - no periods
- I changed "vein of usefulness" just because it sounds funny, but that is a judgement call.
- I changed "infected" to "affected" patients on the assumption that is what you really meant. To say patients are "infected" at this point is, well, a little loaded. But if that's what you meant this change would not apply.
- Have you got a pdf copy of Carruthers et. al. that isn't missing a big chunk of pages in the middle? The only one I've got is missing a large number of pages and that's the only version I've been able to find on the Internet. If you DO have a complete copy that would be great to have in the library!

 

[George]

Very nicely done Sasha, and I'm gonna think about the "spirit of usefulness" verse the "vein of usefulness" cause I like both. Spirit sounds so much happier but vein sounds so much more serious. hmmmm

Really nice clean up and I'm ready to copy and paste the changes but I have a question first. I thought it was proper to put the periods in M.E./C.F.S. and that ME/CFS was actually correct but considered lazy????? I want to send this to Francis Collins and Faccui and some others do you know if it would appear too lazy to remove the periods?????

You did a great job! Thank you so much!

 

[George]

General notes:

- ME/CFS - no periods
- I changed "vein of usefulness" just because it sounds funny, but that is a judgement call.
- I changed "infected" to "affected" patients on the assumption that is what you really meant. To say patients are "infected" at this point is, well, a little loaded. But if that's what you meant this change would not apply.
- Have you got a pdf copy of Carruthers et. al. that isn't missing a big chunk of pages in the middle? The only one I've got is missing a large number of pages and that's the only version I've been able to find on the Internet. If you DO have a complete copy that would be great to have in the library!

Awesome UT, dang you guys are good. No my copy of Curruthers et al 2003 has the same missing pages. In fact I'm wondering if I need to send it because it's such a well known document. What do you guys think???

And Sasha and UT I'm taking out the periods of the ME/CFS. I'll change the letter and ETA that it's now changed to reflect the wonderful work by you guys! (ruff and slurp, lick)

 

[urbantravels]

Acronyms do not have periods - that is correct style in every stylebook and in all forms of publishing and media. NIH, CDC, NAACP, MS, ME/CFS, HIV, AIDS, etc. etc. etc.

 

[Sasha]

Very nicely done Sasha, and I'm gonna think about the "spirit of usefulness" verse the "vein of usefulness" cause I like both. Spirit sounds so much happier but vein sounds so much more serious. hmmmm

You're welcome!

I suggested an alternative to "vein" because although you can be "in an X vein", I've never seen it phrased as "in a vein of X" and thought it might be an incorrect usage. This could be a US/UK difference, though. Would "It is with the intent of being useful that I am writing to you today..." maybe be a good but serious-sounding alternative?

Really nice clean up and I'm ready to copy and paste the changes but I have a question first. I thought it was proper to put the periods in M.E./C.F.S. and that ME/CFS was actually correct but considered lazy????? I want to send this to Francis Collins and Faccui and some others do you know if it would appear too lazy to remove the periods?????

The use of periods in these things is now considered old-fashioned (I remember when it wasn't!). One of those annoying things that you used to get shot for not doing but now get shot for doing. We tend not to notice until years after the change. Newspapers etc. have house style rules in which they instruct their writers no longer to include the periods and you can see examples all over, for example in Amy Dockser Marcus's XMRV piece here in the Wall Street Journal, where you can see her using "CFS" instead of "C.F.S." You won't look lazy, just breathtakingly modern!

 

[George]

egads am I that old? humm, I remember writing formal letters in our business class in high school on the old fashion typewriters, and no they weren't electric! Ah the pain the terrible pain of it all. (grins)

Now for the List of test!

 

[OverTheHills]

This is a fabulous idea George, have a nice doggy treat.

Particularly appropriate as I think Dennis Mangan is the one that asked us to help him to help us ? (hard to tell through brainfog but he was referring I think to increasing research applications - as if a bunch of housebound poor laypeople have much leverage).

Well you've showed him the way to help us, he is hoist by his own petard*, particularly as its such a low cost petard. A cunning plan.

I wish I could help you with a list of tests but in this regard I am as useful as a chocolate teapot.

I would like to suggest a more punchy thread title so others might use this excellent list of demands/politely phrased request in another MAILING CAMPAIGN. Sorry about the baroque post. I'm feeling rather eccentric today.

OTH

*A petard was a medieval small bomb used to blow up gates and walls when breaching fortifications. How appropriate.

 

[helen41]

well written, well edited, well done!

 

[George]

This is a fabulous idea George, have a nice doggy treat.

Particularly appropriate as I think Dennis Mangan is the one that asked us to help him to help us ? (hard to tell through brainfog but he was referring I think to increasing research applications - as if a bunch of housebound poor laypeople have much leverage).

Well you've showed him the way to help us, he is hoist by his own petard*, particularly as its such a low cost petard. A cunning plan.

I wish I could help you with a list of tests but in this regard I am as useful as a chocolate teapot.

I would like to suggest a more punchy thread title so others might use this excellent list of demands/politely phrased request in another MAILING CAMPAIGN. Sorry about the baroque post. I'm feeling rather eccentric today.

OTH

*A petard was a medieval small bomb used to blow up gates and walls when breaching fortifications. How appropriate.

LOL you rock OTH, I'm 'bout pooched after writing the stupid letter but I think I may get a second wind after eating your "chocolate teapot" (not so useless after all, eh, Big Grins) What do the rest of you guys think should I change the name on the thread???

 

[Lynn]

Hi George, Great letter. I looked over the thread and didn't see this mentioned.

By encouraging doctors to run these test were indicated - were should be where

Lynn

 

[Sasha]

egads am I that old? humm, I remember writing formal letters in our business class in high school on the old fashion typewriters, and no they weren't electric! Ah the pain the terrible pain of it all. (grins)

...and I was there too, on the other side of the Atlantic... fff jjj fjf jfj... all together now...

 

[George]

Hi George, Great letter. I looked over the thread and didn't see this mentioned.

By encouraging doctors to run these test were indicated - were should be where

Lynn

Thank you Lynn I'll fix that and Thanks Helen

heheheh yep and the dreaded

aaa ;;; aaa ;;; a;a ;a; aaaaaaaaaaaaaakkkkkkkkkkk and a big oowwwww! man when I got to college I loved those 'Selectrics' !!!

I found this posted by Jackie over in test and diagnostices. (can I say doh!) Maybe we can flesh it out a bit like she suggests.

HI juniemarie! Great idea and I'm glad you brought this up (and thanks for your hard work!). This got me thinking - I remembered reading a section in the Canadian Consensus Document (the ME/CFS/FM Definition, diagnostic and treatment criteria/guidelines), that had an extensive list of tests suggested. It "reads" better in the context of the Document, but here are the basics I noted:
CBC, ESR, Ca, P, Mg,
Blood Glucose, serum electrolytes
TSH, protein electrophoresis screen
CRP, ferritin, creatinine
Rheumatoid Factor, Antinuclear antibody
CPK, Liver Function, Urinalysis
and additional:
Diurnal Cortisol levels, 24hr. Urine free Cortisol
Hormones including:
Free testosterone, B12 & folate levels
DHEA sulphate
5-HIAA screen
abdominal ultrasound
stool for Ova & parasites
NK cell activity
flow cytometry for lymphocyte activity
Western Blot for Lyme
chest X-ray
TB skin test
HIV
Do testing for 37-kDa 2-5A RNase l Immunoassay
For Neurological tests:
X-ray &/or MRI Brain & Spinal Cord
Tilt-Table*
Sleep Study
qEEG, SPECT & Pet Scan
24 hr. Holter Monitoring
!!!!!!!
I was too tired to write what each test was relating to....but your idea is a good one. Maybe others can continue to add to this.
Many of these are standard, of course...but I've been asking for a SPECT for 3 years...and "they" keep turning me down!

jackie

Maybe we can do the top 5 in 5 catagories like

Immune

Neurological

Endocrine

Cardio/Autonomic

Metabolic

This comes from DysautonomiaXMRV's wonderful list on the following thread http://www.forums.aboutmecfs.org/showthread.php?2490-All-the-different-test-s-can-we-list-them/page2

but can anybody help me pick the top 20 that you guys think would be most helpful to recommend???

 

[CBS]

Herpes tests including EBV, HSV, CMV and HHV-6

Hi George,

Tests - Herpes tests including EBV, HSV-1&2, CMV and HHV-6.

Would it make sense for your second point to elevate the importance of having a more homogeneous patient sample for research purposes. Heterogeneous groups lead to a lot of noise, obscuring the signals they are hoping to find. Right now it is the last sentence in the paragraph and the wording seems to imply that it isn't ready to employ as a research tool (I know it was developed for clinical use) but I disagree with the argument that it can't be used as a research definition. I think Jason has done some work on operationalizing it for use in research.

"In the future it will allow researchers to more easily identify large groups of patients for clinical trials and make clean groupings and subgroupings possible."

Perhaps some thing like - "Consistent use of Carruthers' diagnostic criteria in ME/CFS research will yield a far more homogeneous patient cohort with more sever disease than the cohort identified by use of the CDC criteria. Heterogeneous patient groups used in CFS research (a large majority of whom had never sought treatment and did not identify themselves as even having CFS) have lead to a long history of useless research where any potential signal has been hopelessly lost amongst the noise.

FWIW

 

[George]

Hi George,

Tests - Herpes tests including EBV, HSV-1&2, CMV and HHV-6.

Would it make sense for your second point to elevate the importance of having a more homogeneous patient sample for research purposes. Heterogeneous groups lead to a lot of noise, obscuring the signals they are hoping to find. Right now it is the last sentence in the paragraph and the wording seems to imply that it isn't ready to employ as a research tool (I know it was developed for clinical use) but I disagree with the argument that it can't be used as a research definition. I think Jason has done some work on operationalizing it for use in research.

"In the future it will allow researchers to more easily identify large groups of patients for clinical trials and make clean groupings and subgroupings possible."

Perhaps some thing like - "Consistent use of Carruthers' diagnostic criteria in ME/CFS research will yield a far more homogeneous patient cohort with more sever disease than the cohort identified by use of the CDC criteria. Heterogeneous patient groups used in CFS research (a large majority of whom had never sought treatment and did not identify themselves as even having CFS) have lead to a long history of useless research where any potential signal has been hopelessly lost amongst the noise.

FWIW

I think you are right the viral panel needs to be added to the top 20 list.

So, (big grins) why don't ya copy and paste the letter and make some changes and you can send one too!!!! (batting doggy eyelashes)

 

[CBS]

So, (big grins) why don't ya copy and paste the letter and make some changes and you can send one too!!!! (batting doggy eyelashes)

A most excellent idea.

Thanks for taking this on and encouraging all of us to do the same.