Responses to individual points in the P2P report

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Wally

Senior Member
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1,167
@Sasha,
I thought that this thread had a reference to the outstanding question to the ODP regarding retention of Public Comments to the draft report, but I may have been mistaken. Anyhow, since this thread relates to Public Comments for the Draft Report I am referencing a posting I have made in the "P2P Report Is Out" thread with an update on a conversation I had with the ODP (Paris Watson) this morning in regards to retention of any Public Comments submitted for the Draft Report or the two day P2P Workshop that took place in December. Here is a link to the posting regarding that conversation. See, Reply #558 at http://forums.phoenixrising.me/index.php?threads/the-p2p-draft-report-is-out.34480/page-28
 
A

Anne

Senior Member
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295
SUPER-IMPORTANT QUESTION:

Are there two different versions of the Draft Report around? I have different line numbers than you, @Sasha!

Sasha said:
(Lines 92-93) Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a psychological disease in etiology.

(Lines 113-116) Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET]) demonstrate measurable improvement, but this has not translated to improvements in quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a component of multimodal therapy.

(Lines 282-284) Studies addressing biopsychosocial parameters (including the mind-body connection), function, and QOL should be encouraged.

(Lines 362-364) The modest benefit from CBT should be studied as adjunct to other modalities of treatment such as self-management. Future treatment studies should evaluate multimodal therapies.

(Lines 384-385) We believe there is a specific role for multimodal therapy.​
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In the Draft Report in this link:
https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

the line numbers are the same for your first two quotes, but the other three I find on lines 275- 276, 348-350 and 370-371!

Very worrying - what has happened here? Do I have an old version?
 
S

Sasha

Fine, thank you
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Anne said:
SUPER-IMPORTANT QUESTION:

Are there two different versions of the Draft Report around? I have different line numbers than you, @Sasha!

In the Draft Report in this link:
https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

the line numbers are the same for your first two quotes, but the other three I find on lines 275- 276, 348-350 and 370-371!

Very worrying - what has happened here? Do I have an old version?
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That's weird - I've double checked and my line numbers are correct (at least for the version of the document that I've printed off).

Can they possibly have put out two versions?!
 
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Anne

Senior Member
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295
Sasha, if you open the link, do you get my version or your version on the screen?
 
B

Bob

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J

jspotila

Senior Member
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1,099
There are two versions. ODP says it is aware of the problem (which is good since they are the ones responsible for creating the problem). They have alerted the Panel which is devising a system to make sure they assign people's comments to the correct lines.

I will have more on this tomorrow, or as soon as my brain cooperates. As an interim suggestion, you may want to note at the beginning of your comments that you are using the 403 line version or the 389 line version. There are no text differences between the two versions (I checked).
 
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Sean

Senior Member
Messages
7,378
Different line numbering. Just what we need, with a deadline approaching. :mad:

So, there are now two versions, a 19 page 403 line version (the original?), and a 25 page 389 line version (the updated?).

As far as I can tell the both came from the same link, meaning the document on the end of that link has been changed.

https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

I have been using the 19 page 403 line version, and that is what my plain text file is based on.

P2P Draft Executive Summary - plain text version.txt
 
Sing

Sing

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cfsac@hhs.gov

Cort Johnson's Blog recommends sending in your copy to CFSAC above by tomorrow, Jan 7, to be considered during their conference call on P2P which will happen on Jan 13, 1-3 pm.
 
J

jspotila

Senior Member
Messages
1,099
Sean said:
Different line numbering. Just what we need, with a deadline approaching. :mad:

So, there are now two versions, a 19 page 403 line version (the original?), and a 25 page 389 line version (the updated?).

As far as I can tell the both came from the same link, meaning the document on the end of that link has been changed.

https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

I have been using the 19 page 403 line version, and that is what my plain text file is based on.

P2P Draft Executive Summary - plain text version.txt
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It's pretty ridiculous. Today's blog post will offer a work around to ensure comments are understood. And to be honest, there will be a healthy dose of editorializing too.
 
S

Sean

Senior Member
Messages
7,378
The draft of the rest of my comments, except for on Lines 326-27, and 357-58. Still looking at those.

Also haven't added a comment about the Oxford criteria yet.

Did it as an attachment (in plain text), so it doesn't clutter up the thread with bulk text.
 

Attachments

  • P2P comments - 2.txt
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A

Anne

Senior Member
Messages
295
Sasha said:
Criticism #2

The report should call for the NIH to fund biomedical research into ME/CFS with an budget commensurate with the burden of the disease, of at least $287 million a year.

[Lines 5-9] An estimated one million people, mostly women, are affected. ME/CFS is an unmet public health need with an economic burden estimated to be greater than $1 billion. ME/CFS results in major disability for a large proportion of the people affected. Limited knowledge and research funding creates an additional burden for patients and health care providers.

[Lines 213-221] Investing in bench-to-bedside to policy research for ME/CFS is recommended [...] The NIH Institutes and Centers [...] and other U.S. Department of Health and Human Services (HHS) agencies should coordinate research efforts to promote efficiency and effectiveness, while also using public/private partnerships to leverage and catalyze the use of existing NIH infrastructure and dollars.

[Lines 390-391] There is a role for new and ongoing policies to spark innovation and fund new research. For instance, new avenues are needed to fund research, such as the Prescription Drug User Fee Act.​

The report (lines 5-9) acknowledges that an estimated one million people in the US have ME/CFS and that it results in major disability for a large proportion of those affected. According to the UK Department of Health, "Estimates suggest that up to 25% of people with CFS/ME are so seriously affected that they are unable to perform most basic personal tasks and are confined to bed or spend the majority of the day in bed.”

http://webarchive.nationalarchives....@dh/@en/documents/digitalasset/dh_4064945.pdf

The estimated cost to the US is not $1 billion as stated in lines 5-9, but over $19 billion (The economic impact of ME/CFS: individual and societal costs. Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. Dynamic Medicine 2008, 7:6, available athttp://www.dynamic-med.com/content/7/1/6).

Despite this disease burden upon patients and economic burden on society, the NIH spends an average of $5 million a year and ME/CFS is 229th out of 237 ailments on NIH’s grant list, in terms of funds allocated.

http://report.nih.gov/categorical_spending.aspx

MS has a similar disability profile to ME/CFS but affects only 4 people for every 10 with ME/CFS. Nevertheless, it typically receives about $115 million in annual NIH research funding: so in proportion, MS receives roughly 60 times as much funding as ME/CFS.

The report must call upon ME/CFS to have approximate pro-rata research parity with MS, which would be an annual budget of $287 million.

Although the NIH’s budget has been cut in recent years, this is irrelevant. Other diseases must forego a tiny fraction of their research income so that ME/CFS can have its decades-overdue fair cut of the total NIH pot. Immediate fair redistribution is essential.

The report as it stands does not mention direct NIH funding (lines 213-221 and 390-391). This must be changed.
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Thank you, Sasha, for all of your posts in this thread, extremely helpful.

A question: Can you help me clarify how we got to the figure of $287 million. Is it the amount of dollars per patient spent on MS patients, multiplied with the 1 million ME patients in the States?
 
S

Sasha

Fine, thank you
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UK
Anne said:
A question: Can you help me clarify how we got to the figure of $287 million. Is it the amount of dollars per patient spent on MS patients, multiplied with the 1 million ME patients in the States?
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Sasha said:
MS has a similar disability profile to ME/CFS but affects only 4 people for every 10 with ME/CFS. Nevertheless, it typically receives about $115 million in annual NIH research funding: so in proportion, MS receives roughly 60 times as much funding as ME/CFS.

The report must call upon ME/CFS to have approximate pro-rata research parity with MS, which would be an annual budget of $287 million.
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$115m per 4 people = $28.7m per person.

If you have 10 people, you need 10 x $28.7m = $287m.

Hope that helps! Yes, it's the amount per patient spend on PWMS, scaled up to the PWME population.
 
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