My email to American College of Rheumatology

Andrew

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I must emailed this to American College of Rheumatology. They are a professional organization, not school. I might try sending this to schools of rheumatology, but I'm not sure if there is an easy way to get the emails.



To whom it may concern.

Rheumatologists are the specialists to whom primary care physicians refer patients with chronic fatigue syndrome. Typically, rheumatologists have not been adequately trained in the care of chronic fatigue syndrome. They might tell the patient there is nothing to be done except SSRIs and sleep aids, or perhaps something like Provigil. The problem with this type of approach is it only scratches the surface, and the patients are left with a low level of care.

I offer the following list of resources about the care and treatment of patients with chronic fatigue syndrome. Most of these can be downloaded for free and printed; one is a book that can be purchased.

I hope you find it in your hearts to present this list to your members in an attention-getting way. It will go a long way to helping your members and their patients. I also hope you recommend that your members acquire all the resources listed below. The cost is almost nothing.

1. The New Jersey Consensus Manual for the Treatment of Chronic Fatigue Syndrome.
Go to this web address: http://njcfsa.org/
Click on Physicians' Manual for Diagnosing and Treating CFS
Then click on CFS Consensus Manual.pdf

2. The Canadian Consensus Guide for ME/CFS
Go to this web address: http://www.mefmaction.net/PhysiciansResearchers/Guides/tabid/531/Default.aspx
Click on ME/CFS Consensus Document

And/or if a doctor wants to quickly get started understanding the management of chronic fatigue syndrome, there is a brief “overview” version on the same page. To download this, click on : ME-CFS-Overview.pdf

3. Chronic Fatigue Syndrome: A Treatment Guide by Varrillo and Gellman.
This book is written for patients who want to help their doctors understand how to manage chronic fatigue syndrome. And as such, it is a good book for doctors to read. I suggest doctors at least skim the pharmaceutical section, and become familiar with basic testing.

4. Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Go to this web address: http://www.sciencemag.org/cgi/content/abstract/1179052
This journal abstract covers an emerging area of investigation that looks more promising than past theories. Doctors should follow this development along with checking the Whittemore-Peterson Institute web site for updates: http://www.wpinstitute.org/

5. Recovery from Chronic Fatigue Syndrome.
Go to this web address: http://www.recoveryfromcfs.org/.
Click where it says: Print or save from pdf file.
Then click the link for saving the pdf.
Or, simply read it from the web site.
This is a guide that doctors can recommend to patients so patients can help themselves manage daily living with chronic fatigue syndrome.

6. International Association for CFS/ME
Go to web address: http://www.iacfsme.org
This is an association for physicians and researchers with a professional interest in chronic fatigue syndrome. On this site are educational papers, newsletters, and notifications of conferences that focus on chronic fatigue syndrome.

Thank you for your assistance.
 

Andrew

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Since I last posted I've contacted them a few times. They ignore every contact I make.

Here is the email address I sent to the first few times acr@rheumatology.org. Here is the email of the executive I sent a letter to: mandrejeski@rheumatology.org. Here is their contact page: http://www.rheumatology.org/about/stafflist.asp

Below is my most recent letter, I don't plan to contact them again, except perhaps to tell them I hope they do more in the future.

August 30, 2010

[my address was here]

Mark Andrejeski, executive vice president
American College of Rheumatology
2200 Lake Boulevard NE
Atlanta, GA 30319

Dear Mr. Andrejeski:

Three times in the past I emailed American College of Rheumatology about a gap in the information on your website. Each time my email went unanswered. So I am writing this letter in the hopes that it gets attention and brings a response.

The problem: Rheumatologists are the specialists to whom primary care physicians refer patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, but rheumatologists have little or no training in this area. Also, patients are reporting that rheumatologists are asking them (the patients) to suggest information about the treatment of CFS/ME, but most patients do not know what to suggest.

A solution: Provide rheumatologists with a focused reading list that provides a foundation to begin helping patients. Include resources that are applicable to the clinical setting. Use sources that are based on formal research and the clinical experiences of CFS/ME specialists.

I created such a reading list and emailed three earlier drafts to acr@rheumatology.org. I received no response Attached is the 8/25/2010 revision of the reading list. I ask that you review this and get back to me for discussion. There are patients who need help, and doctors who need the tools. I hope we can work together to solve this.

Sincerely,
Below is the reading list I attached. A more recent version is in my blog here.

Chronic Fatigue Syndrome - Myalgic Encephalomyelitis (CFS/ME) reading list (revised 8/25/2010)
There is a great deal of information about CFS/ME, but it is usually not taught in medical schools. This reading list attempts to help remedy this. All but one of the resources are free.

Foundational Resources - the following two works are essential resources that compliment each other

Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia. Haavisto, 2008. This book covers more than 250 pharmaceuticals for CFS/ME symptoms, comorbid conditions, and disease processes. Available as an eBook or printed book. Go to: http://www.brokenmarionettebook.com/?book.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners. Carruthers & van de Sande, 2006. This practical guide for clinical use explains illness process, diagnosis, testing, and treatment. It is a condensed version a larger work created by an international panel of CFS/ME specialists. Go to: http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf. This document takes several seconds to load.

Highlight Topics - these brief abstracts amplify common issues

The Roles of Orthostatic Hypotension, Orthostatic Tachycardia, and Subnormal Erythrocyte Volume in the Pathogenesis of the Chronic Fatigue Syndrome. Am J Med Sci. 2000 Jul;320(1):1-8. http://www.ncbi.nlm.nih.gov/pubmed/10910366

Immunologic abnormalities in chronic fatigue syndrome. J Clin Microbiol. 1990 June; 28(6): 1403-1410 . http://jcm.asm.org/cgi/content/abstract/28/6/1403

Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms. APMIS. 2003 May;111(5):557-66. http://www.ncbi.nlm.nih.gov/pubmed/12887507

A Formal Analysis of Cytokine Networks in Chronic Fatigue Syndrome. Brain Behav Immun. 2010 May 3. http://www.ncbi.nlm.nih.gov/pubmed/20447453

Exercise Capacity in Chronic Fatigue Syndrome. Arch Intern Med. 2000;160:3270-3277. http://archinte.ama-assn.org/cgi/content/abstract/160/21/3270 .

A Recent Development - patients might ask about this

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors. http://www.pnas.org/content/early/2010/08/16/1006901107

Optional Resources

Recovery from Chronic Fatigue Syndrome. This document teaches patients how to manage daily living. A doctor could browse this and decide whether to recommend it to patients. This document is geared toward patients who are moderately disabled. http://www.recoveryfromcfs.org/pdffiles/recovery.pdf

Disease Prevention and Treatment. For doctors or patients who like to use nutritional supplements for illness management, this resource contains research-based information. A condensed version of the books CFS/ME section is available online at: http://www.lef.org/protocols/immune_connective_joint/chronic_fatigue_01.htm. Scroll down to where the nutritional information begins. There is also a PDF version available at the top of the article.

A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. Prepared by the Academy of Medicine of New Jersey and the New Jersey Department of Health and Senior Services, this manual instructs doctors in the care of patients with CFS/ME. http://njcfsa.org/Manual.pdf.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. This is the comprehensive work on which Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners (above) is based. http://www.mefmaction.net/documents/journal.pdf
 
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I thought that Fibromyalgia is a Rheumatology issue not CFS??? When I review the CFS physician referral lists, such as CO-CURE it seems that there are few Rheumatologists on the list. Maybe you should tackle the infectious disease docs, since the disease seems to have an infectious component!!!!
 
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Where are you getting this statics from??? I've communicated with tons of CFS patients and most were referred to psychiatrists, not Rheumatologists:)
 

August59

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I'm making a geuss on this, but I think that they will start referring PWC's to "Infectious Disease" doctors if not now, they will pretty soon. This may also depend on whether your XMRV+ or not. Like I said it's just a guess. Here is the link to the " Infectious Diseases Society of America" http://www.idsociety.org/default.aspx. Their homepage has something about Lymes on it now.

Edit: The mentioned Society is strongly opposed to the thinkings of LLMD (at least used to be - they do not believe in long term use of antibiotics)