The P2P Draft report is out

[Sasha]

Does anyone recall who showed the slide of the effect sizes of CBT and GET that included PACE?

 

[Bob]

I see the figure of 25% often quoted for the % of PWME who are bedbound or housebound, but what study does that come from?

I think this may have originated from a 2002 independent report commissioned by the UK Department of Health.

A Report of the CFS/ME working Group:
Report to the chief Medical Officer of an Independent Working Group.
2002.
Department of Health.
http://webarchive.nationalarchives....@dh/@en/documents/digitalasset/dh_4064945.pdf

This is the relevant quote:
"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. Such patients feel particularly alone and isolated.The severity, complexity, and longevity of the illness are poorly understood."



NICE have slightly different ideas about the prevalence of severely affected patients, but they acknowledge that no proper research has been carried out...

NICE Clinical Guidelines for CFS/ME:
http://www.ncbi.nlm.nih.gov/books/NBK53587/

"No definitive studies have been carried out in the UK to determine the prevalence of severe CFS/ME in people with CFS/ME, but estimates range from 25% [4] (population and setting not clear) to a lower figure experienced in general clinical practice.[‡‡‡] People who have severe CFS/ME may be unable to carry out activities of daily living and may spend a significant proportion, or all, of the day in bed."

 

[Sing]

@Sasha Look on page 9, post 173 by Sidereal, for an image and analysis from the PACE trial report

 

[Ember]

This is a section of Susan Mayer's presentation at the IOM regarding the P2P process. She explains the make up of the P2P panel and the "jury model" of the process.... There is a big problem with this process. All the evidence was brought by one side, the NIH.

Jenny Spotila observes too that NIH alone selected the Panel:

No, actually, it is nothing like a jury. For one thing, juries are selected in public, with both sides of a case having the opportunity to question potential jurors and move for their disqualification. The P2P Panel? Selected by NIH, behind closed doors, with no transparency for how they are screened for bias or preconceptions about ME/CFS. That’s like letting the prosecution choose a jury before anyone walks into the courtroom. Furthermore, this “jury” will make decisions based on an evidence base and field that is controversial, confusing, and laden with bias. No jury would ever be cast adrift in such murky waters without multiple layers of guidance and experts to assist them.

NIH gave no assurance, to my knowledge, that the Panel would be sequestered from NIH influence. What jury would be given 24 hours to weigh all the evidence and arrive at a verdict?

 

[Ember]

A lumper's verdict (at the risk of being cynical):

“Anything goes in... Anything goes out... Fish, bananas, old pyjamas... Mutton, beef and trout!”

 

[Gemini]

What data do we have that demonstrate what a disabling illness this is, and how long it goes on for?

From my notes, FDA meeting April 25, 2013 CDC's Dr. Unger presented preliminary data from the 7-site study indicating 75% of patients (n=393) were unable to work & the mean duration of illness was 15 years.

Dr. Unger presented an update on the 7-site study to the CFSAC December 3-4, 2014 meeting indicating 75% of patients (n=471) were not working & that the severity of illness is high. She may have presented this to P2P as well?

Perhaps you can review video of these presentations?

Dr. Komaroff quoted something like 25-56% homebound and/or bedbound years ago in his presentations but I don't have a reference for it.

 

[Ren]

Just a recent thought... The draft report acknowledges the stigma associated with ME/CFS, and this is good.

But Per Fink (and others?) has also said how patients are treated so poorly by medical personnel, etc. and have no help, and so that's why he works so hard to help such poor patients.

And when people have protested CBT/GET, Fink has responded by saying (something like) it's so sad and hurtful that such protesters/trouble makers don't want these poor stigmatized patients to have treatment - that they dislike them so much they don't want them to have help.

And then it's something like Fink saying that no matter how much other people believe that such patients don't deserve treatment (CBT/GET), Fink is going to keep fighting to ensure that patients receive treatment (CBT/GET).

(This is obviously very general paraphrasing and was taken from a Danish magazine article, translated in part under blogs - should anyone like a reference.)


Also, from meadvocacy.org:

"This is a carefully crafted political document. If your alarm bells didn’t ring at the five mentions of “self-management” in the Draft Executive Summary, then the myriad ways the authors stated the psychological: major depressive disorder, biopsychosocial parameters, multimodal therapy, mind-body connection, anxiety, and fear surely should have gotten your attention."

http://www.meadvocacy.org/p2p_sold_..._creek&utm_medium=email&utm_source=meadvocacy

So, I just wanted to emphasize again how ideas/concepts can be (and actively are) manipulated to suit harmful purposes. (Or... how people in power actively manipulate ideas/concepts in order to justify harm. Imo, it's the abuser who says, "I'm doing this for you.")

Also and in case no one has yet commented on this... Elsewhere (mecfsforums I believe), someone observed that the draft report says something like ME/CFS is not psychiatric in etiology - but this does not nullify the belief that psychiatric traits (?)/behaviors maintain ME/CFS. This is "Wesselian", right??

(Edit: Bob and jmells - - seem to have touched on the above in post 29 and earlier.)

 

[Gemini]

I see the figure of 25% often quoted for the % of PWME who are bedbound or housebound, but what study does that come from?

It's misleading.

Need to qualify "bedbound" & "homebound" for an accurate picture.

Drs. Lily Chu, Jason, et al April 2013 online patient survey [n=623] indicate 61% are bedridden on the worst days of illness; on the best days 75% are homebound:

http://www.iacfsme.org/LinkClick.aspx?fileticket=PuRykxCauTk=&tabid=119

Excerpt:
Using the SF-36 Physical Functioning subscale, we found our respondents to be more disabled than 95% of the general US population as well as the average patient with chronic lung disease, congestive heart failure, or osteoarthritis. Only 13% were employed, with almost all citing ME or CFS as the reason why they could not work.

 

[Wally]

I have sent an e-mail to the Director of the Office of Disease Prevention ("ODP"), Dr. David Murray, to ask the questions raised above, as well as several additional questions/comments related to the P2P Report Process.
. . .
Here is my e-mail (redacted to take out my contact information), as well as an earlier e-mail and response from Dr. Murray, which I posted here - http://forums.phoenixrising.me/index.php?threads/when-does-the-p2p-report-come-out.34217/ (Reply #14).
. . .
When I receive a response to my e-mail I will post it here in this thread. If anyone else would like to raise questions/comments to Dr. Murray, his contact information is noted in these e-mails.

I received an e-mail response today from Paris Watson addressing the questions I had asked about the P2P Report Process. Here is a copy of Ms. Watson's response to my e-mail.

Tue, Dec 30, 2014 9:03 am
Questions regarding NIH P2P

From Watson, Paris (NIH/OD) [E] (NIH/OD) [E] watsonpa@od.nih.gov
To *********

Dear M*********,

Thank you for your interest in the NIH Pathways to Prevention (P2P) program.

We appreciate your comments and apologize for any confusion.

In response to your 3 concerns:

1. You are correct. The posted document has the title, “Draft Executive Summary,” and this same document is also titled on our website, “Draft Report.” There is only one draft document and we will make certain that for future P2P workshops, there is only one title used.

2. We do not set an exact closing time for the public comment period in order to give as many people as possible an opportunity to comment by Friday, January 16th in all time zones. There are four weeks to comment via email and we accept all public comments received by postal mail that is postmarked by the closing date. Public comments are forwarded to the panel and are not retained.

3. As mentioned during the Workshop, the final report will be published in the journal, Annals of Internal Medicine. We make every effort to post the final report shortly after the Annals of Internal Medicine posts it on their website. It is difficult to state an exact time for posting since we are dependent on the journal’s posting.

Again, thank you for your interest.

Paris

Paris A. Watson
Senior Advisor
National Institutes of Health | Office of Disease Prevention
Phone 301.496.6615 | watsonpa@od.nih.gov | http://prevention.nih.gov/

NIH…Turning Discovery Into Health®

Sat, Dec 20, 2014 2:21 am
Re: Timing for Public Posting of the Draft P2P Report for ME/CFS and Additional Questions re Draft/Final Report

From ************
To david.murray2 david.murray2@nih.gov
Cc francis.collins francis.collins@nih.gov

Dear Dr. Murray,

Thank you for responding to my question regarding the timing for posting the Draft P2P Report for ME/CFS.

I have had an opportunity to review the document that was posted on the ODP website at 5:30 pm (EST) on December 18, 2014. In reviewing this document and the timing of this posting, I have several additional comments/questions about this process.

1) In all the communications I have heard or seen from the ODP, reference is made to posting a "draft report" on 12/18/2014. However, the "draft" that was posted by the ODP is identified as a "Draft Executive Summary". Since, an executive summary is normally a term used to describe a document that summarizes a longer report, the posting of this “draft executive summary” rather than a "draft report" has raised a number of questions that I am requesting be addressed by the ODP.
a) Is there a "P2P ME/CFS Draft Report" and a "P2P ME/CFS Draft Executive Summary”?
1) If yes, why was a "Draft Executive Summary" and not a "Draft Report" posted on 12/18/2014, when it has been represented to the public that a "Draft Report" would be made available for review and comment?
2) If no, will the P2P Workshop Panel write a draft report and will this document be made available for public review and comment? Will the public review and comment period be extended for this "draft report"?

2) Since there is a deadline when public comments for the "draft report" will be accepted for review, it would seem that more specificity is needed as to the cutoff time when comments will no longer be accepted (i.e. e-mail received before close of business at 5:00 pm (EST), or by 11:59 pm (EST), or some other time frame on the last day that comments will be accepted. If comments are sent by postal mail does this mail need to be postmarked on or before the last day or must it be received by the ODP before the close of business on this last day? Will these public comments be made available for review by the public? If yes, when and how will these comments be made available for review?

3) It would also be very helpful if information about the posting of the P2P ME/CFS Final Report could include both a date and a time frame for when the report will be posted for viewing. Without this type of specificity the public is left not knowing when during the day or night the final report will be made available for viewing. Many members of the public who are interested in viewing this document are ill and disabled and it seems reasonable that accommodation be made to make this information accessible in a clear and straight forward manner.

To assist you in review of the questions and comments I have outlined above, I am also including references to the ODP website where information has been provided about the posting of a "draft report" and a "final report". As well as references to when comments related to the "draft report" would be accepted for review. These references are included at the bottom of this e-mail.

Very truly yours,

************
************
************

*I request that my contact information be redacted in any public dissemination of these e-mail communications.
___________________________________________________________________

"Immediately following the workshop, the panel convenes in executive session for 1 day and develops a draft report. The draft report is posted on the ODP website, and public comments are accepted for 4 weeks. The final report is then released approximately 2 weeks later. The panel may edit its statement for clarity, correct any factual errors that might be discovered, and revise the draft report according to public comments. After the panel report is finalized, the report is released and panelists hold a press telebriefing to address media questions." See, https://prevention.nih.gov/programs-events/pathways-to-prevention/frequently-asked-questions.

"Comments on the Panel’s Draft Report
Submit Comments on Draft Report
Comments will be accepted through Friday, January 16, 2015. Please reference the corresponding line number of the report, and submit your comments via:
Email
prevention@mail.nih.gov
Or
Postal mail
Office of Disease Prevention
National Institutes of Health
ATTN: Paris A. Watson
6100 Executive Boulevard, Suite 2B03
Bethesda, MD 20892"
See, https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/public-comments

"...The Panel Report will be published at the Office of Disease Prevention's website. . . on Thursday December 18th, you will have 30 days to submit public comment on that Panel Report. .. . .The Panel will then begin to consider comments made on that Draft Report. Mid February we will announce when the Final Panel Report will be released and where it will be released. . . ."
See, Paris Watson at hour/minute marker at 4:35:50 thru 4:37:32 at http://videocast.nih.gov/summary.asp?Live=14727&bhcp=

"The draft report is posted on the ODP website, and public comments are accepted for 14 days. The final report is then released approximately 2 weeks later." See, http://videocast.nih.gov/summary.asp?Live=14723&bhcp=1

 

[Roy S]

2. ... Public comments are forwarded to the panel and are not retained.

???

 

[Wally]

2. ... Public comments are forwarded to the panel and are not retained.

???

I have sent a follow-up e-mail to Ms. Watson to ask if this statement means the public comments will be deleted/destroyed and therefore not available to a FOIA request.

 

[Denise]

I have sent a follow-up e-mail to Ms. Watson to ask if this statement means the public comments will be deleted/destroyed and therefore not available to a FOIA request.

Thanks for following up Wally! I look forward to her reply...

 

[Nielk]

Mary Schweitzer printed a guest post on her blog "Slightly Alive". It is the comment to the p2P draft report by Katharina Voss - mother of two very ill daughters with ME. This is a very important read.

Katharine Voss of Germany has graciously consented to my publishing her testimony to the P2P (NIH "Pathways to Prevention [P2P]" committee report on how NIH should fund future research on ME and CFS. Note: NIH has never funded more than $5 per patient in research on ME or CFS anyway - as compared to $350 per person for MS, a similar disorder. The P2P report was produced by a "jury" deliberately formed of completely uninformed members, who listened to "testimony" from "stakeholders" and then formed their conclusion. Their report can be found here:
NIH's P2P program's MECFS-Draft Report

Apparently NIH no longer believes in the scientific process, preferring, as one representative chirped happily, the "jury system! - it's the American way!"

Katharine Voss has two daughters with the disease. She presented testimony to the P2P because US government actions have international repercussions. I thought her testimony deserved a wider readership, so with her permission I have posted it here. I also wish to thank Jan Van Roijen for first widely posting Katharine's testimony on his private information list.

-------------------------------

Katharine Voss
December 27, 2014

Public comment on the P2P Draft Statement by Katharina Voss, Dec 2014:
(Corresponding line numbers of the report are shown here in parentheses, reference numbers are shown here in brackets)
What does the NIH leadership really think about our disease?
"They hate you!"
This was the answer of a retired NIH scientist to a patient at a medical conference in New York City, Dec 2013. [1] And his answer was the first and only honest answer patients with ME ever got from NIH. This NIH scientist frankly expressed what patients with ME undergo every single day: they face a wall of hatred and scorn.

The NIH P2P Draft Statement clearly shows that he was right.
As many of ME activists predicted we got just the same bad recommendations given to Gulf war veterans (whose disease was “redefined” into the belittling “CMI”) and fibromyalgia patients. [2] NIH wants to put us off with ineffective harmful treatments like GET, CBT, antidepressants, and self-management. (Lines 113-116, 135-138, 344-350, 370-371).

Self-management – have we read correctly? What else are we doing now for decades in the absence of proper medical care? Self-management! And the NIH spends millions of taxpayers` dollars to recommend self-management? Are you kidding us?
These treatments like GET, CBT, antidepressants, and self-management ("multimodal therapy“) couldn't possibly be effective for some psychological disorders, but they do harm to patients with organic diseases like ME, a fact that is proven by true science but which is rejected by the P2P "experts“! [3]

Continue HERE.

 

[Sasha]

"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. Such patients feel particularly alone and isolated.The severity, complexity, and longevity of the illness are poorly understood."

NICE have slightly different ideas about the prevalence of severely affected patients, but they acknowledge that no proper research has been carried out...

NICE Clinical Guidelines for CFS/ME:
http://www.ncbi.nlm.nih.gov/books/NBK53587/

"No definitive studies have been carried out in the UK to determine the prevalence of severe CFS/ME in people with CFS/ME, but estimates range from 25% [4] (population and setting not clear) to a lower figure experienced in general clinical practice.[‡‡‡] People who have severe CFS/ME may be unable to carry out activities of daily living and may spend a significant proportion, or all, of the day in bed."

Thanks, Bob - I'll look at the source documents but it sounds as though the estimate might not be based on anything very solid.

It's misleading.

Need to qualify "bedbound" & "homebound" for an accurate picture.

Drs. Lily Chu, Jason, et al April 2013 online patient survey [n=623] indicate 61% are bedridden on the worst days of illness; on the best days 75% are homebound:

http://www.iacfsme.org/LinkClick.aspx?fileticket=PuRykxCauTk=&tabid=119

Excerpt:
Using the SF-36 Physical Functioning subscale, we found our respondents to be more disabled than 95% of the general US population as well as the average patient with chronic lung disease, congestive heart failure, or osteoarthritis. Only 13% were employed, with almost all citing ME or CFS as the reason why they could not work.

Thanks, Gemini - but actually, that survey doesn't seem to have been a 'survey' in the normal sense, just a summary of the characteristics of patients who came forward. They're unlikely to have been representative of the population of patients.

It would be a bit of a shocker to me if there isn't any proper survey data on this question. It's fundamental. If health agencies don't have a clear picture of disease burden, how can they possibly deal with a disease appropriately?

 

[Bob]

Thanks, Bob - I'll look at the source documents but it sounds as though the estimate might not be based on anything very solid.

The first NICE reference (no 4.) is for the same DoH report that I cited. Like you say, it's not substantial evidence.

 

[Sasha]

Quite apart from this issue of % of PWME bedbound/housebound, I recall that someone recently posted a link to a possibly not-very-recent paper - @Dolphin? - about how ME affected quality of life (social, work, etc. etc.) and found ME to be profoundly disabling in every aspect of a patient's life (no surprise to anyone here - failure to produce energy is going to affect everything).

I wonder if there are any good references on this issue?

 

[Dolphin]

Quite apart from this issue of % of PWME bedbound/housebound, I recall that someone recently posted a link to a possibly not-very-recent paper - @Dolphin? - about how ME affected quality of life (social, work, etc. etc.) and found ME to be profoundly disabling in every aspect of a patient's life (no surprise to anyone here - failure to produce energy is going to affect everything).

I wonder if there are any good references on this issue?

Maybe this paper?

The quality of life of persons with chronic fatigue syndrome.

J Nerv Ment Dis. 1997 Jun;185(6):359-67.

Anderson JS, Ferrans CE.

http://forums.phoenixrising.me/inde...fatigue-syndrome-anderson-ferrans-1997.33668/

 

[Ember]

Jennie Spotila writes, “Perhaps it’s my legal training, but when I read this draft report I see so many loopholes. If I were NIH and I did not want to increase funding for ME/CFS research or change the institutional approaches to the disease, then I would scan this report looking for ways to continue that policy.”

The NIH Draft Report shows that little has changed since Dr. Unger articulated the institutional approach to the disease at the 2nd International Symposium for CFS/ME a year ago:

He then introduced Elizabeth Unger (Atlanta,USA) to give the closing address. She said she had learnt a lot that day and had found it very exciting. She acknowledged that ME/CFS is a big public health problem, with epidemiology studies showing great economic impact. Interventions are needed such as education of the public, primary care physicians, nurses etc. Curricula are slowly developing. Many pathways are affected in this illness, and it needs to be dissected apart. She asked the question as to whether we actually need a case definition, as it does not solve the problem of heterogeneity. We need validated questionnaires. No measures of outcome are readily available. A multisite review of the illness is needed, using a large number of measuring instruments. She discussed the NIH funded PROMIS initiative (Patient Reported Outcomes Measurement Information System). 471 patients have completed questionnaires. There was less diversity than expected, and most respondents have been white upper class, educated people in the higher income bracket. Illness duration is seen as long. There were some symptoms reported by all, but a wide range of diversity. Results need to be combined with biomarkers, and the study is continuing. Results will also be compared with other illnesses such as Chronic Pain.

We'd heard much the same from Dr. Unger in her letter of June 5, 2013:

CDC is fully committed to working with the CFS Advisory Committee (CFSAC) and DHHS to develop consensus about the case definition and name of this devastating illness. The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population....

CDC remains dedicated to conducting public health research, developing educational initiatives, and validating CFS phenotypes by utilizing the clinical expertise of physicians experienced in the care and treatment of CFS patients. CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.

Dr. Unger first announced her multi-site study in November 2011, shortly after the ICC was introduced at the IACFS/ME Conference in Ottawa. Since then, she's been trying to define ME/CFS as a spectrum disease using NIH funded PROMIS questionnaires:

If we have good measures of the domains (and as you know, the field is ongoing as to what are the best measures of the domains), then we try to say how can we capture this the best way. We as a field need to be a little schizophrenic and say yes, we can bring people in under a broader umbrella diagnosis, but then we cannot just group cases and controls. We have to be doing some stratification. We have to use a dynamic range in all of those measures. It is not enough to have just fatigue, but how much fatigue? It is not enough to have any one measure.

Dr. Jason has objected that PROMIS questionnaires don't measure PEM (let alone PENNE):

Many have looked to the Patient Reported Outcomes Measurement Information System (PROMIS), as one possible solution as it is a free database of standardized measures that assess patient reported health status. The PROMIS currently includes self-report questions related to the impact of fatigue on functioning, physical feelings of fatigue and limitations. However, the PROMIS does not investigate triggers/causes of fatigue or duration of fatigue. Also, the PROMIS lacks questions assessing fatigue that results from physical or mental exertion; thus lacking questions that tap into post-exertional malaise. Here are several PROMIS questions: In the past 7 days what was the level of your fatigue on most days? In the past 7 days how much mental energy did you have on average? In the past 7 days how often did you run out of energy? In the past 7 days how often did you experience extreme exhaustion?

Not surprisingly, Dr. Unger has had difficulty validating CFS phenotypes:

This is just an interim analysis, and I would like to emphasize that I think that this interim analysis so far has shown us that there is a heterogeneity in the CFS population as a whole. There is a little bit between clinics but more in the patients than between clinics. This is also giving us a hint that phenotypic measures themselves may be limited in their ability to distinguish robust phenotypes or robust subgroups and that's why we're proposing to expand this study to some other measures, and it could very well be that other biologic correlates will be needed in order to better define subgroups.

Dr. Unger refuses to use the two-day exercise test in her ongoing staged study, and the “Pathways to Prevention [of] Advancing the Research on ME/CFS” provides NIH with a reason now to continue its current policy, i.e., not to increase funding or change the institutional approaches to the disease: “A clear case definition with validated diagnostic tools is required before studies can be conducted.”

The Draft Report reinvents the 2012 CFSAC recommendation with reference to a research definition, even as HHS reinvented it for the IOM contract. That move follows Dr. Lee's charge to the IOM Committee: “HHS has requested that the IOM committee coordinate with two ongoing HHS efforts concerning ME/CFS in order to minimize overlap and maximize synergy.” A token patient was invited to shed a few tears, and questions are managed with talking points.

 

[Hope123]

I've only read here and there on this thread, and it's a bit too long for me to tackle (now at least). That said, I just wanted to share a couple of thoughts associated with post 461 above.

Re statement 1 - "cost to the US economy..." I see that this statement is related to the economy, but has anyone mentioned that when reporting the number of people affected (prevalence?) that these figures should include the world estimate as well? The 17 million number, as well as the 1 million US number. To my understanding, the report only uses the 1 million number.

If I remember correctly though, the previous P2P draft report on opioids and chronic pain includes info for the number of people affected in the US and the number of people affected worldwide. So if other P2P reports have done this - especially this most recent report - then I think it's all the more acceptable for this info (world prevalence) to be included in the ME/CFS P2P report as well.

Also, shouldn't they say which definition these prevalence rates are based on?

And regarding statement 2 above - "...funds commensurate with economic burden that is on the same scale as..." - I just wanted to add that I've often seen the phrasing - commensurate with illness burden - too. Maybe the illness burden term also captures populations outside the usual working age years? I don't know. It's subtle, but just thought I'd mention it should it make a difference.

Personally, I NEVER use the 17 million figure because as I understand it,

a) it came from the XMRV studies -- I think from one of the Mikovits papers -- and since those are suspicious, I'd rather not use them as a source

b) I use Lenny's Jason figure of 0.4% prevalence as it's from a community-based study and it's within what NIH used (the lower limit was 0.25%); if you use that and the US population, it comes out to approximately 1 million (or 1.2 million); if you use the world population estimate of 7 billion, 0.4% would be 28 million (not 17 million)

However, those figures in and of themselves have to be taken with a grain of salt as it's assuming 0.4% is a good estimate and that ME/CFS affects people globally in a uniform manner (e.g. people in China just as likely (not more or less) as US people to get ME/CFS).

c) I would rather underestimate rather than overestimate the numbers affected to be conservative. So I use "at least 1 million" or "conservatively 1 million people" when I write/ speak.

(BTW, if anyone can find the source for the "17 million" and link to it, I'd like to know. I remember looking into the origin a while back but it's been a long time.)

 

[Dolphin]

Personally, I NEVER use the 17 million figure because as I understand it,

a) it came from the XMRV studies -- I think from one of the Mikovits papers -- and since those are suspicious, I'd rather not use them as a source

b) I use Lenny's Jason figure of 0.4% prevalence as it's from a community-based study and it's within what NIH used (the lower limit was 0.25%); if you use that and the US population, it comes out to approximately 1 million (or 1.2 million); if you use the world population estimate of 7 billion, 0.4% would be 28 million (not 17 million)

However, those figures in and of themselves have to be taken with a grain of salt as it's assuming 0.4% is a good estimate and that ME/CFS affects people globally in a uniform manner (e.g. people in China just as likely (not more or less) as US people to get ME/CFS).

c) I would rather underestimate rather than overestimate the numbers affected to be conservative. So I use "at least 1 million" or "conservatively 1 million people" when I write/ speak.

(BTW, if anyone can find the source for the "17 million" and link to it, I'd like to know. I remember looking into the origin a while back but it's been a long time.)

The 0.422% figure related to adults. The prevalence in those under 18 is likely lower (esp. for those who haven't reached their teens).

BTW, Njoku, Jason & Torres-Harding found a rate of 0.68% in Nigeria.

J Health Psychol. 2007 May;12(3):461-74.
The prevalence of chronic fatigue syndrome in Nigeria.
Njoku MG1, Jason LA, Torres-Harding SR.