International ME/CFS and FM Awareness Day Is On May 12, 2018
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Responses to individual points in the P2P report

Discussion in 'Advocacy Projects' started by Sasha, Dec 28, 2014.

  1. medfeb

    medfeb Senior Member

    This is excellent work. Thank you.

    Another angle on the level of funding is the estimate of burden of disease reflected by the DALY (a measure of disease burden produced by WHO).

    The following references are useful for that. Thanks are due to Snow Leopard and A. Kewley for this work.

    Kewley A. “Measuring Disease Burden: How and Why.” Research 1st CFIDS Association of America. October 13, 2011.

    [1] Snow Leopard. “What is wrong with this graph.” Phoenix Rising. July 10, 2012. The graph in this reference was developed from the DALY estimates posted by WHO and the Australian government and the funding levels provided by NIH
    Last edited: Jan 11, 2015
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  2. Anne

    Anne Senior Member

    Thanks! I'd like to rephrase this in one comment by mentioning the numbers: the amount per patient spent on MS, compared to the the amount per patient spent on ME. So that would be $6 per PWME (in the US) and $360 per MS patient??

    (if it's 60 times more for MS)
  3. Sasha

    Sasha Fine, thank you

    CFS is $5m per 1m patients, so $5 per patient. MS is $115m per 400,000 patients, so $287 per patient (strictly speaking, 57.4 times more for MS, but who's counting? :cool:)
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  4. medfeb

    medfeb Senior Member


    There are a few other points I might add to build on what you have pulled together.
    1) The report incorrectly states that there are " 163 symptoms have been associated with ME/CFS" (line 50). This is a misquote of Nacul's point that there are 163 unique combinations of Fukuda symptoms of which only 35 require PEM. So 128 combinations do not require the hallmark symptom that both CCC and ME-ICC require. This is especially significant when you consider that unlike CCC and ME-ICCC, Fukuda allows the inclusion of primary psychiatric illness. Jason has emphasized this point in a variety of ways, stating that Fukuda (and Empirical) can be used in ways that encompass patients who do not have ME but do have mental illness.

    2) building on the previous bullet and the points that you made about Oxford…
    the report continues to have a lack of clarity on the nature of the disease. Patients and experts alike have long stated that PEM is mandatory. This report does acknowledge that PEM is a consistent feature in one part but not in others and falls short of calling for it to be mandatory. The report states that the disease is not psychiatric in etiology but then goes on to endorse a multimodal approach, calls for studies into biopsychosocial parameters, and supports the use of CBT and GET. THere is no acknowledgement that 1) these approaches reflect a belief that the disease is predisposed and maintained by psychological factors or 2) that PACE style CBT is not about helping patients cope with a chronic disease and PACE style GET is not about stretching

    The failure to be clear about the scope of disease (hallmark symptoms like PEM and exclusion of primary psychiatric illness) has caused immeasurable harm for years. This report continues this ambiguity and that must be addressed.

    3) institutional barriers at NIH - this is the only disease administered by NIH's Office of Research on Women's Health (ORWH). ORWH has no budget so they have to go beg for funds and interest from the institutes. None of those institutes have declared a strategic interest in this disease and in fact where they have shown an interest in the disease, its been very narrow. For instance, in the current grant announcement, one of the institutes has stated that they are interested in studies that look at the connection between this disease and urologic chronic pelvic pain syndromes. Others, with the exception of the neurological institute, have a similarly narrow focus. This affects both the ability to get funds and the ability to establish a strategic approach to this disease

    4) the report calls for open, transparent collaborations going forward. Given that HHS has acted unilaterally, this call sounds naive, especially since the report fails to acknowledge HHS' lack of transparency, its failure to listen to stakeholders, etc with regards to this disease. The report must call for a new model of engagement which is directly and openly accountable to the key stakeholders.

    Again, thanks so much. Great help
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  5. Anne

    Anne Senior Member

    For anyone including in their P2P comment the need for RFAs, this might be useful.

    Here’s what I found on the various times it has been recommended that NIH issue RFAs:

    The CFS Advisory Committee (CFSAC), which provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to ME/CFS, has made this recommendation on numerous occasions, including:

    - Nov 2011:
    “CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).”

    - October 2012:
    “CFSAC recommends:
    […] - Instructing the NIH to issue an RFA (funded at the $7-10 million range) for projects to establish outcomes measures for ME/CFS diagnosis, prognosis and treatment which would include but not be limited to biomarker discovery and validation in patients with ME/CFS.”

    - June 2014:
    “CFSAC recommends that the NIH issue a Request for Applications (RFA) for ME/CFS by November 1st, 2014, or as soon as feasible, to address the gaps in ME/CFS knowledge and research. The RFA should consider current known gaps in knowledge for the following areas:

    - Provocation designs where symptoms are triggered through standardized challenges involving exercise, cognitive tasks, and mental stressors. These designs appear to be more likely to identify symptom to biology relationships in comparison to assessments done in resting states.

    - Ambulatory monitoring of symptoms, activities, behaviors, and physiological states that identify associations between biological and behavioral measures, e.g., daily fatigue ratings and cytokine fluctuations.

    - Network analysis of dysregulation of multiple bodily systems, such as the neuroendocrine system, the central nervous system, the autonomic nervous system and the immune system.

    - Natural history studies aimed at identifying the genetic triggers and causal factors of ME/CFS.

    - Treatment trials that address both clinical and biologic outcomes.

    This RFA may also be informed by the gaps identified in the 2011 NIH State of the Knowledge Workshop, the Pathways to Prevention Program for ME/CFS research panel report or any relevant source, including but not limited to, the IACFS meeting summary.”

    The calls for RFAs have been echoed by several parties.

    In March, 2014, eleven members of Congress wrote NIH Director Dr. Francis Collins, saying:
    ”We applaud your efforts […] in hosting the ME/CFS Research Workshop in April 2011. The Workshop concluded that there continues to be a need for additional interdisciplinary research, coordination of research, centralized data sharing, and recruitment of additional qualified investigators. These suggestions are in line with the recommendations of the HHS CFS Advisory Committee, including an NIH RFA in the range of $7-10 million.

    We encourage you to act decisively on these recommendations. We also ask that you provide us with the current status of the effort to meet the need in ME/CFS research, as well as plans for moving forward with a strong and fully supported research program.” letter - Dr. Collins - March 2014.pdf

    In April, 2014, the professional organization for clinicians and researchers, International Association of CFS/ME (IACFS/ME) wrote an open letter to Dr. Francis Collins:

    “We call on you and Directors of key Institutes at NIH to collectively work together to issue a Request for Applications (RFA) calling for R01 and R21 projects related to ME/CFS. At a level of $7-10 million annually for five years, an RFA would double current funding and bring talented investigators into the field for the first time. The ME/CFS RFA would also dovetail nicely with ongoing NIH initiatives including those related to the brain, big data and transformative research.

    We realize the substantial reductions in the NIH budget over the past decade have made it hard to issue RFAs. This is even more reason that we must focus our support on specific targets that are poised to make significant progress in the near future. With ME/CFS related to so many other medical diseases and conditions, support for research on ME/CFS will add to, for instance, our understanding of chronic pain, viral/ bacterial infections, sleep disorders, fatigue, autoimmunity, and cancer. In this regard, ME/CFS research already has aided knowledge of Gulf War Illness, fibromyalgia, retroviruses, and Lyme disease.

    The Trans-NIH ME/CFS Research Working Group members have been helpful in coordinating awareness of the disease at the NIH. However, without financial support, their efforts to enhance applications to study ME/CFS are limited to oral encouragement. We all know that is not enough. The State of the Knowledge Workshop on ME/CFS in 2011 concluded that there is a need for interdisciplinary research, coordination of research, centralized data sharing, and recruitment of additional qualified investigators. The ME/CFS RFA could address those needs as well as the longstanding CFS Advisory Committee appeal for such an RFA.”
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  6. Bob


    England (south coast)
    Here's some NIH research spending comparisons, including spending per head and prevalence rates for various conditions.
    I thought I'd post this here in case useful for anyone.
    I've double-checked for accuracy, but it might be wise to check again before using.

    NIH spending on research 2014 (estimated):
    ME/CFS $5m
    HIV/AIDS $2,978m
    Autism $190m
    Multiple Sclerosis $115m
    Parkinson's disease $139m
    Allergic Rhinitis (Hay Fever) $9m

    NIH spending on research per head 2014:
    ME/CFS $5
    HIV/AIDS $2,482
    Autism $59
    Multiple Sclerosis $287
    Parkinson's disease $221

    Prevalence rates (USA):
    ME/CFS 1m [ draft executive report ]
    HIV (2011) 1.2m [ ]
    Autism Spectrum Disorder 3.2m [ ]
    MS 400,000 [ ]
    Parkinson's disease 630,000 [ ]

    Source for NIH spending totals:
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