Posts Tagged 'IACFS/ME Primer'

IACFSME Primer is now (as of 31 Dec. 2012) on guidelines.gov

The IACFSME Primer (“Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners”” is available to everyone with Internet access via the National Guideline Clearinghouse* (NGC) website.

NGC is a public resource for evidence-based clinical practice guidelines. As with all material on the NGC site, the IACFSME Primer underwent extensive review to ensure it met the standards for guidelines.gov. Inclusion of the Primer on the the site is validating and we hope that you share the link (http://www.guidelines.gov/content.aspx?id=38316 ) far and wide.

Guideline Summary NGC-9288

Guideline Title

Chronic fatigue syndrome/myalgic encephalomyelitis. A primer for clinical practitioners.

Bibliographic Source(s)

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). Chronic fatigue

syndrome/myalgic encephalomyelitis. A primer for clinical practitioners. Chicago (IL): International Association for Chronic

Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME); 2012. 41 p. [121 references]

Guideline Status

This is the current release of the guideline.

Scope

Disease/Condition(s)

Chronic fatigue syndrome, also known as myalgic encephalomyelitis….”

*NGC is part of the Agency for Healthcare Research and Quality (AHRQ) which is part of the U.S. Department of Health and Human Services (DHHS).

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The public comment presented at the CFSAC meeting October 3 and 4, 2012 was strong, and some excellent points were made (some of them over and over again). Federal funding for ME/CFS research is pitifully small and the public comment by Ms. Janelle Wiley provided some interesting comparisons.

Ms. Wiley (who provided her comment by phone) has kindly given permission to share her public comment here:

“Hi, I cannot travel to speak to you in person but it’s Good to be with you by phone; thanks for your attention to ME/CFS. One thing that strikes me when listening to CFSAC meetings is that there is never any encouragement for any funding.

There is no reason under the sun why ME/CFS is not being funded like any other disease. Yes, I get that there is a budget crisis and we need to spend less on the national budget. But the amount being spent on our disease or disease spectrum–6 million dollars in a good year–is easily available to many state budgets. North Carolina spends 10 million on aquariums. The city of Glendale, Arizona, spent 23 million in outside counsel over 5 years, which is 4 million per year (we get that amount some years). California spend almost 45 million on new vehicles and almost 30 million on new furniture. New York is spending 50 million dollars on ads promoting its business policy. These aren’t necessarily bad projects; point is that our budget or even 5 times more is well within the reach of a much smaller body right now in this current economy.

It is shameful that ME/CFS is basically not being funded.

Whatever model it is we are using to fund research, it should be applied to ME/CFS the same as to Lupus and cancer and Alzheimer’s, taking into consideration the burden and incidence of the disease.

I do not know what the hangup is, but it is not the sad state of the national budget. That’s just an excuse. Whatever the problem really is, please fix it. This is a very serious disease which isn’t being handled seriously at all. I don’t think the problem is in this room, but please talk to your uplines. Thanks.

In using funds to do studies, there are two main things that need to be addressed. One is the SEP panel. Typically it is staffed with mostly people who are mostly interested in psychogenic theories. These theories are not scientific—e.g. cannot be proven and do not consider alternate hypotheses or accept disproof—and have not yielded any useful ideas: they did not for Parkinson’s disease or multiple sclerosis, and they are not for fibromyalgia, TMJ, or ME/CFS. It is past time to consciously change the bias from the psychogenic to the biomedical.

The second is the definition. There has been a lot of talk about lumping and splitting. Both are appropriate methods of approaching a problem—to a point. But there is a point at which lumping becomes absurd. When you are no longer lumping “people who are similar to ME/CFS” together and you’re gathering “people whose doctors or researchers have not (or have not bothered to) figure out what’s actually wrong with them”, you’ve gotten to the absurd point.

There are multiple inclusion criteria for CFS or ME/CFS being used. It’s well known that the Oxford inclusion contains large numbers of people who can be diagnosed with other conditions. A Newcastle study demonstrates this. David Tuller wrote about it in the New York Times. We wrote about it in ME Analysis. It’s been mentioned here at CFSAC a lot. The Oxford inclusion identifies people who have longlasting fatigue of definite onset without requiring other symptoms. CDC says this is “idiopathic chronic fatigue” and not CFS. Yet the CDC, like most everyone else, makes heavy use of Oxford studies to decide what to do with ME and CFS patients. This is not science. It’s kind of, quackish. Many articles in the literature call attention to problems with this.

The “Empiric” surveys which are used by CDC to attempt to operationalize the Fukuda criteria select—almost entirely—people who do not have ME/CFS. This approach to inclusion has been rejected by CFSAC, by the international symposium at Bond University, and by patient advocates around the world. And in the literature. The problem with this approach is that it allows feeling depressed or sad to substitute for debility and fatigue. Those are not actually the same thing. It’s no wonder CDC’s webpage claims it’s difficult to distinguish between depression and CFS! They looked for depression under the title of CFS, and found depression, which they label CFS. Funny how that works.

Also, education. CDC is very proud of themselves that they have educated a lot of people. What they may not realize is that, partly because of the uncorrected problems with inclusion criteria, CDC’s information is very wrong in many particulars. Despite the urgent need for physicians to know about this condition, I, like many others, am actually appalled that multiple health care providers have seen CDC’s education. Misinformation is actually worse than no information. The IACFS/ME’s Primer is a useful document which exists now.

So in summary, what we need is funding—and this is attainable—and we need to use it wisely. Quit relying on the psychogenic model, and instead rely on a model that produces solutions: biomedicine.

Thank you”

 

References:

 

  1. Newton JL, Mabillard H, Scott A, Hoad A, Spickett G. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb. 2010 Dec;40(4):304-7.
  2. http://www.nytimes.com/2011/03/08/health/research/08fatigue.html and author reply to White et al. http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html?ref=research (see all of Tuller’s articles http://www.research1st.com/2011/12/08/tuller-tells-it-like-it-is/ and an interview with him http://www.theopennotebook.com/2012/01/18/david-tuller-cfs/ )
  3. http://evaluatingpace.phoenixrising.me/homepageanim.html
  4. Bond university. International Science Symposium for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/ CFS). 02-04 December 2010. http://www.bond.edu.au/research/research-at-bond/events/BD3_014159
  5. Jason LA, Helgerson J, Torres-Harding SR, Carrico AW, Taylor RR. Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability. Eval Health Prof. 2003 Mar;26(1):3-22.
  6. Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. [Article in Swedish] Lakartidningen. 2002 Aug 22;99(34):3282-7. Abstract.
  7. Jason LA, Evans M, Brown A, Brown M, Porter N, et al. “Sensitivity and Specificity of the CDC Empirical Chronic Fatigue Syndrome Case Definition.” Psych. 2010 Apr; 1(1):9-16.
  8. Carruthers, B. M., et al. (2011), Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327–338. doi: 10.1111/j.1365-2796.2011.02428.x
  9. Carruthers, et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols.” J CFS 2003. 11(1) http://www.co-cure.org/ccpccd.pdf
  10. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9.
  11. Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER; International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Serv Res. 2003 Dec 31;3(1):25. Review.
  12. Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, Edwards RH, Hawton KE, Lambert HP, Lane RJ, et al. A report–chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21. Department of Psychiatry, University of Oxford.
  13. Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome–a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.
  14. Holmes GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB, Straus SE, Jones JF, Dubois RE, Cunningham-Rundles C, Pahwa S, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med. 1988 Mar;108(3):387-9.
  15. A M Ramsay, E G Dowsett, J V Dadswell, W H Lyle, and J G Parish. Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease). Br Med J. 1977 May 21; 1(6072): 1350.
  16. Maes M, Twisk FN. “Chronic fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways.” BMC Med. 2010 Jun 15;8:35. PMID: 20550693
  17. http://www.nccivitas.org/2009/300-million-wasteful-and-frivolous-spending-included-fy-2009/;
  18. http://www.controllinglegalcosts.com/2011/09/15/iowa-spends-over-6-million-in-outside-counsel-fees-over-five-years/
  19. http://www.wjhg.com/news/headlines/Florida-Spends-50-Million-on-Gasoline–169217196.html
  20. http://www.sdgln.com/news/2010/02/10/california-budget-crisis-diaries-state-spends-75-million-furnishings-and-more
  21. http://wyrk.com/new-york-state-spends-big-bucks-for-new-business-campaign/

     

     

    Thank you to everyone who participated (in any way shape or form) in the October 2012 CFSAC meeting!

Announcement: Position Paper in Support of the CFSAC Recommendations on the CDC CFS Toolkit and the IACFS/ME Primer (updated 12 Sept 2012)

On September 10, 2012, an alliance of ME/CFS patient organizations and independent advocates submitted a position paper to the CDC in support of the June 2012 CFSAC recommendation to remove the CFS Toolkit and make the IACFS/ME Primer widely available.  Our goal in submitting this joint position paper is to improve patient care by significantly improving the clinical guidance material available to medical providers, insurance companies, health clinics, secondary medical educators and patients.

For years, patients have expressed serious concerns regarding the content of the CDC CFS Toolkit because it fails to convey the seriousness of the disease, offers inadequate diagnostic guidance and it even fails to acknowledge PEM as a hallmark symptom while focusing on CBT and GET for treatment. The Toolkit also states that the same clinical guidance is appropriate for both ME/CFS and “CFS-like illness” (chronic fatigue but without the 4 symptoms), which only blurs the line with other causes of fatigue such as depression. As a result, the CDC CFS Toolkit has mis-educated medical providers and led to inadequate patient care, harmful clinical recommendations and stigmatizing of patients. 

By comparison, the IACFS/ME Primer provides much more accurate and complete information about the pathology of ME/CFS and also provides extensive diagnostic and treatment information. As Steve Krafchick, CFSAC member, stated, the IACFS/ME Primer is “a good, basic document that gives a primary care physician a real road map, whether it is to consider a differential diagnosis or different treatment options. There’s nothing like it anywhere else”.

Is it perfect? No. There are opportunities to improve it and the IACFS/ME has undertaken an effort to do just that. But as it is, the content of the Primer is far superior to the content of the Toolkit, providing both immediate benefits to medical providers and patients and also a significantly better baseline from which to make improvements over time.

It is for that reason that the alliance of ME/CFS patient organizations and independent patient advocates have jointly submitted this position paper to the CDC and requested that the CDC seriously consider this patient perspective as they consider their actions on the CFSAC recommendation. We have asked for a response to our recommendations by Oct 22, 2012.

You can access the position paper, toolkit and primer at the following links:

CDC CFS Toolkit: http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf

IACFS/ME Primer: ME/CFS: A Primer for Clinical Practitioners – IACFSME > Home

The full position paper: http://dl.dropbox.com/u/89158245/Position%20Toolkit%20IACFSME%20Primer%20Sept%2010.pdf

If you have any questions or comments, do not hesitate to contact one of the organizations or individuals who submitted the position paper. These include:

ME/CFS Patient Organizations          (update 12 Sept 2012 – Pro-Health has signed on)

Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago Phoenix Rising
Coalition 4 ME/CFS Portland Fibromyalgia-ME/CFS
The Connecticut CFIDS & FM Association, Inc. Rocky Mountain CFS/ME and FM Association
Mothers against ME Speak Up About ME
Massachusetts CFIDS Association, Inc. Vermont CFIDS Association, Inc.
New Jersey CFS Association, Inc. Wisconsin ME/CFS Association, Inc.
PANDORA (a.k.a. CFS Solutions of West Michigan)

ME/CFS Patient Advocates              (update 12 Sept 2012 – Rich Carson has signed on)

Lori Chapo-Kroger, R.N. Mike Munoz
Lori Clovis Matina Nicolson
Mary Dimmock Donna Pearson
Pat Fero, MEPD Mary Schweitzer, Ph.D.
Joan Grobstein, M.D. Meghan Shannon
Jean Harrison Rivka Solomon
Cort Johnson Jennifer Spotila, J.D.
Patricia LaRosa, R.N., MSN Tamara Staples
Denise Lopez-Majano Patty Strunk
Billie Moore