The P2P Draft report is out

[Ecoclimber]

As mentioned by others on here with regards to the P2P executive draft report, those who wish to make a comment should praise the sections and items we agree on and add additional comments to those sections we disagree with supporting evidence. I am wondering how the committe arrive at the $1 billion cost of society each year. I heard it was close to $29 billion.

There is still confusion within the ME/CFS community as well as government official on how the P2P differs from the IOM with some stating the P2P is for research. My understanding is the P2P will be rolled out to medical community.

Given the revelations of FOIA, I still am skeptical on the govenment's intent. Is this just another smoke screen? Because of past decades of abuse by the NIH and the CDC with this patient community, they have the obligation and duty to verify their intent is above board with action plans based on the P2P recommendations.

1. A mandate to allocate funding for ME/CFS research by the NIH including Lipkin's microbiome project. $665 million dollars have been awared to research microbiome but none slated for ME/CFS

2. Since they mentioned demographic bias concerns, move research out of the office of research on womens health ORWH since 25-30% who have ME/CFS are men and lack of ethnic consideration. As it stand now, there is a discriminatory component to the research

3. Remove the current CDC information on ME/CFS from the website and include the information in the physician toolkit that ME/CFS is not a psychological nor psychiatric disease in etiology and that treatment by antidepressants and other psychotropic intervention can cause harm to patients.

Acknowledge the fact there is reproducible evidence of neurocognitive dysfunction with abnormalities in functional
magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS, potentially important for defining and treating ME/CFS.

The Oxford criteria (published in the Journal of the Royal Society of Medicine in February 1991) are flawed and include people with other conditions, confounding the ability to interpret the science. Specifically, continuing to use the Oxford definition may impair progress and cause harm. We therefore retire the Oxford definition and the Pace Trial based on the Oxford criteria is flawed and must be excluded as a treatment option.

Clearly define the fact that CBT/GET should never be considered or used as a recovery treatment. It is only ancillary as treatment for those who wish to avail themselves of the treatment to help adjust to the ravaging consequences of this disease in a similar fashion as used by cancer, MS, Parkison patients.

We believe ME/CFS is a distinct disease that requires a multidisciplinary care team and this team should include a triage within the medical profession of ME/CFS knowledgeble and trained physicians within these fields infectious disease, rheumatology, neurology, nutritionists, endocrinology, physiology, cardiology.

 

[Bob]

I am wondering how the committe arrive at the $1 billion cost of society each year. I heard it was close to $29 billion.

Is anyone aware of any evidence that we can cite for the costs to society of ME/CFS in the US?

 

[Denise]

Is anyone aware of any evidence that we can cite for the costs to society of ME/CFS in the US?

This could be one source to cite:

 

[akrasia]

And another:


http://www.cfids-me.org/marys/costs.html


The True Costs to the Nation of Public Apathy Regarding Chronic Fatigue Syndrome
Mary Schweitzer, Ph.D.

ABSTRACT

Chronic Fatigue Syndrome (also called CFIDS or M.E.) is a relatively "new" disease that sprang into public consciousness in the mid-1980s. Unfortunately for the victims, the appearance of this disease has coincided with a national mood of resentment about "having to" pay to study diseases and treat the victims. "We would like to," our Congressional representatives say, "but we can't afford it." To the contrary, we cannot afford to ignore it. The true costs of this disease to the nation are the goods and services that patients -- over 400,000 American adults -- would have produced had they been well. This paper estimates a lower-bound figure of $7.5 billion in lost goods and services every year CFIDS victims remain untreated, undiagnosed, and invisible. Since the estimate was based on personal income (assuming that the labor market is efficient and that wages equal productivity), we can add that the nation loses $2.5 billion annually lost income tax revenues that would have been collected had these people been able to work. Somehow the $13 million allocated so begrudgingly by Congress to the study of this disease seems penny wise and pound foolish, when each year 200 times that amount is lost to Federal coffers. If empathy for the victims or a sense of national purpose is insufficient, then perhaps we can understand the need to invest in knowledge of this disease to reduce the current costs incurred by the nation's ignorance.

 

[jimells]

CPET is not an ideal diagnostic test though. Its a risky one.

While I was fighting for disability benefits over the course of six years, I would've consented to this test in a heartbeat. The risk of death from denial of access to the necessities of life is... 100%. The risk of serious harm from the CPET is certainly not higher.

Now that I have benefits I wouldn't touch it with a ten foot pole.

 

[Ember]

Can anyone provide additional prevalence information?

Dr. Jason presented consistent findings among three samples:

DePaul sample involved a convenience sample of adults self-identifying as having ME, CFS, or ME/CFS;
Solve CFS Biobank Sample included participants who had been diagnosed by a licensed physician specializing in the illness;
Newcastle Sample involved patients referred to the Newcastle-upon-Tyne Royal Victoria Hospital and given a complete medical workup.

Consistent findings among data sets:
About 95% met the CFS Fukuda et al criteria;
About 75% met the case definition for ME/CFS;
About 60% met the case definition for ME-ICC.

Earlier this year, Frank Twisk reported these numbers:

Prevalence and Impact
Nacul et al. (2011) found that 0.19% of 143,000 individuals (18–64 years) met the commonly used Fukuda criteria for CFS (Fukuda et al., 1994), while 0.11% met the more strict criteria for ME/CFS (Carruthers et al., 2003), including post-exertional malaise. Prevalence rates of ME (Carruthers et al., 2011) remain to be investigated, but based upon (Nacul et al., 2011; Jason et al., 2012b; Maes et al., 2012a; Brenu et al., 2013) it is estimated that 30–50% of the subjects meeting the CFS (Fukuda et al., 1994) criteria fulfill the more stringent criteria for ME (Carruthers et al., 2011).

 

[Ecoclimber]

Economic impact
Reynolds et al. (2004)[119] estimated that the illness caused about $20,000 per person with CFS in lost productivity which totals to $9.1 billion per year in the United States.[21] This is comparable to other chronic illnesses that extract some of the biggest medical and socioeconomic costs.[56] A 2008 study[120] calculated that the total annual cost burden of ME/CFS to society in the US was extensive, and could approach $24.0 billion.[121]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3554865/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

A National Institute of Health (NIH) study showed the direct and indirect cost of ME/CFS to society in the U.S. is between $18 billion and $23 billion per year. The CDC reported that the direct and indirect cost of FM to society in the U.S. is over $29 billion per year.

 

[catly]

This could be one source to cite:
View attachment 9320

I think that is the lastest paper on estimated economical impact in the US. Here is the link.There is also some references to other countries.

To summarize, the paper estimates he economic cost to be 19-24 billion per year, in the US based on an estimated 800K people with the disease, published in 2008 and including direct ( doctors visits, hospital, medical testing and medications) and indirect (lost productivity, disablity, inablity to perform duties at home e.g.) costs.

Since that was published in 2008 on data from the 1990's I think it would be safe to assume these costs would be higher now--unless the incidence and prevelance of MECFS has declined since then. (Not hoping to open the can of worms on that one).

Can't figure out where the P2P came up with 1 billion.

 

[Hope123]

Economic impact
Reynolds et al. (2004)[119] estimated that the illness caused about $20,000 per person with CFS in lost productivity which totals to $9.1 billion per year in the United States.[21] This is comparable to other chronic illnesses that extract some of the biggest medical and socioeconomic costs.[56] A 2008 study[120] calculated that the total annual cost burden of ME/CFS to society in the US was extensive, and could approach $24.0 billion.[121]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3554865/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

A National Institute of Health (NIH) study showed the direct and indirect cost of ME/CFS to society in the U.S. is between $18 billion and $23 billion per year. The CDC reported that the direct and indirect cost of FM to society in the U.S. is over $29 billion per year.

Another source of economic impact is this CDC article about direct (e.g. medical care) and indirect costs (e.g. lost productivity, taxes, etc.) in Georgia. In the conclusions, they take the numbers from Georgia, extrapolate it to the entire US, and come up with $54 billion a year.

"Georgia has roughly 5.5 million people age 18-59, if the similar patterns prevail CFS could account for $452 million in healthcare expenditures and $1.2 billion of lost productivity for the state."
"For example, extrapolating our data to the U.S. population ages 18-59, CFS could account for as much as (or as little as) $14 billion in healthcare expenditures and $37 billion in lost productivity."

Link: http://www.resource-allocation.com/content/9/1/1

 

[Kati]

Can't figure out where the P2P came up with 1 billion.

To downplay the economic impact and downplay the disease.

 

[Sean]

That figure of 1 billion dollars is so clearly wrong by at least an order of magnitude, probably more, that it might just be a typo.

 

[Kati]

That figure of 1 billion dollars is so clearly wrong by at least an order of magnitude, probably more, that it might just be a typo.

Actually Dr Green mentioned it in the workshop's introduction on the first day. Not a typo. Where they got that number, I am not sure.

ETA it reminds me when I filed a claim for my bike accident. The Insurance company wanted me to sign the declaration that I hit the car, when in fact, it's the car that hit me (and I flew over the hood and on the ground, crack g my helmet). Good try.

 

[Sean]

So much for that theory.

 

[biophile]

The $1 billion figure for USA is absurd and must be corrected ASAP. When spread among 1 million patients, that's only $1000 each per year on average. If illness only decreased my economic output by $1000/year I would be jumping with joy. Even a conservative $25 billion/year figure gives an (unadjusted) $750 billion in losses over the past 30 years.

 

[Sean]

I have redone the report in a plain text version, which makes it easier to play with. See attachment.

Some very minor differences in formatting (some indenting and line breaks).

Please let me know if there are any problems with it.

 

[alex3619]

The $1 billion figure for USA is absurd and must be corrected ASAP. When spread among 1 million patients, that's only $1000 each per year on average. If illness only decreased my economic output by $1000/year I would be jumping with joy. Even a conservative $25 billion/year figure gives an (unadjusted) $750 billion in losses over the past 30 years.

In direct losses alone, due to lack of employment, I would be losing many tens of thousands of dollars a year. $50,000 would not be far fetched, and its probably more than that. Indirect costs would be added to that.

 

[Ember]

The final Evidence Report is more acceptable, in some respects, than the Draft Report. It acknowledges differences between ME and CFS, for example, and suggests that future research use more than one case definition should no consensus be reached on a single definition. It acknowledges too the need for studying further the 2-day exercise test.

Here are some excerpts:

Background

Uncertainty persists regarding the etiology of ME/CFS, whether it is a pathologically discrete syndrome,3,7 whether ME should be considered a subset of CFS or its own distinct disease,5 or whether the symptom set is nonspecific and shared by other disease entities....

The case definitions overlap but vary greatly in their symptom set, leading to concern that they do not all represent the same disease or identify the same cohort of patients.7 The international ME consensus panel of experts recommends that patients meeting the International Consensus Criteria (ICC) be given the name ME, and that those meeting the criteria for CFS but not the ICC for ME be given the name CFS.7 For this report we have considered all case definitions, recognizing that no case definition has been accepted as a reliable reference standard (“gold standard”) and that unresolved issues persist.

Studies Comparing Case Definitions for ME/CFS

S-36 and symptom scales were compared among 74 patients who had been labeled as CFS defined by CDC (Fukuda, 1994) criteria with 39 patients labeled as ME defined by the international consensus criteria (Carruthers, 2011).51 In this study, SF-36 subscale scores indicated less impairment among the CFS group versus the ME group on the physical functioning, bodily pain, vitality, and social functioning subscales. Symptom ratings also indicated less impairment among the CFS group compared with the ME group for PEM, neurological, and pain symptoms....

It may be that the CFS criteria capture a broader population (such that ME and ME/CFS are subsets of CFS), or that ME and ME/CFS identify separate groups entirely.

What Are the Future Research Needs for Definition, Diagnosis, and Treatment of ME/CFS?

Case Definitions: Consensus about which case definition is appropriate to use as the gold standard will further advance the study of diagnostic methods for ME/CFS. In the absence of consensus, future studies aimed at clarifying the diagnosis of ME/CFS should consider reporting how well a particular diagnostic test compares with more than one of the published case definitions. The lack of a definitive diagnostic test should not discourage the support of intervention and treatment studies. Ideally future intervention studies would consistently use an agreed upon single case definition to reduce variability in the patient samples and facilitate comparison of therapeutic benefit across studies. If a single definition cannot be agreed upon, future research should retire the use of the Oxford (Sharpe, 1991) case definition, given that it is at high risk of including patients who may have an alternate fatiguing illness, or whose illness resolves spontaneously with time....

ME/CFS registry: A national longitudinal registry of patients with a diagnosis of ME/CFS would allow for comparison of diagnostic criteria between patients and clarification of diagnoses over time. This strategy could also identify a well-characterized population for use in both diagnostic and treatment trials....

Other: Research is ongoing in diagnosing and treating specific symptoms such as PEM or orthostasis, and synthesizing this literature and evaluating its utility in diagnosing the syndrome of ME/CFS or subsets of the population is needed.6,151-157 Further studies are needed to determine the utility of 2-day cardiopulmonary exercise testing to identify or monitor symptoms of post-exertional malaise.

 

[CBS]

In direct losses alone, due to lack of employment, I would be losing many tens of thousands of dollars a year. $50,000 would not be far fetched, and its probably more than that. Indirect costs would be added to that.

@alex3619 - To state the obvious, I suspect that you (and many other patient advocates) would have been well above average.

The average annual per capita income in the US was estimated to be $28,155 in 2013 (just one of several direct costs associated with any chronic disease) by the US Census Bureau.

 

[Sean]

In direct losses alone, due to lack of employment, I would be losing many tens of thousands of dollars a year. $50,000 would not be far fetched, and its probably more than that. Indirect costs would be added to that.

Before I got sick I had every reasonable statistical expectation of a full working life, and of at least keeping up with the average wage.

I think that puts the baseline of my lost economic activity somewhere near $2 million AUD, so far. Not to mention the additional substantial cost to the community and my family to keep me from complete poverty, from quite literally dying in the gutter.

 

[alex3619]

@alex3619 - To state the obvious, I suspect that you (and many other patient advocates) would have been well above average.

The average per capita income in the US was estimated to be $28,155 in 2013 (just one of several direct costs associated with any chronic disease) by the US Census Bureau.

Yes, I agree. However one really big issue is that many of the mild patients could work part time, and hence have some kind of income. In some cases they can work full time if they cut most things out of their life. So a lot of people with higher incomes, and we need to count decent disability insurance here, change things a lot.

I would also like to point out that per capita is not reflective of what workers actually receive. Now I have decent internet again I may do some searching.

PS Median household income is over $50,000 in the US. See http://en.wikipedia.org/wiki/Household_income_in_the_United_States

This shows median average income for individuals, at over $43K: http://www.ssa.gov/oact/cola/central.html

I prefer median to average as it wont be distorted by very high income people. Average is a fair bit higher than median.