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Consultation on draft report to the NHMRC CEO for ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome’ submission

ID: 
31
Personal Details
First Name: 
Kate
Last Name: 
Shihoffen
This submission reflects the views of
Please add further information: 
Expert patient with ME/CFS
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Poorly
Comments: 
While I would like to begin by saying I heartily applaud you for attempting to right the devastating wrongs that have been perpetrated agaisnst people with this illness, I want this report to go further than it has. I make suggestions on this report. You make no reference to the horrible suffering of millions of patients in the hands of professional unbelievers over the decades. You make little reference to the gravity of the situation. You make no reference to the deaths by suicide that are six times more frequent than in the general population. You miss the human factor entirely.
1b. How well does the report present the challenges facing clinicians in providing care, when there is lack of clarity on diagnostic and management tools, and minimal professional education about the condition?: 
Ok
Comments: 
You are still talking too much about GET and [NHMRC has removed third party information] which no one who is currently doing research considers anything but a huge error and travesty. You would serve the community better if you actually referenced the stellar investigations, support and advice that are readily available online from the organizations I list elsewhere. A basic handout for doctors: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf The Institute of Medicine diagnostic chart: http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_DiagnosticAlgorithm and http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ProposedDiagnosticCriteria An outline with links to chapters of the US government funded Institute of Medicine ME/CFS Report. You will find an exploration of this document will help you answer many of your questions. You will find Bateman and Klimas here as well. https://me-pedia.org/wiki/Institute_of_Medicine_report https://www.healthrising.org/forums/resources/how-to-diagnosing-chronic-fatigue-syndrome-me-cfs.475/
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
You do not offer enough insight into what doctors can do to help patients. And your perspective is dated. If you are educating doctors there is insufficient mention of approaches that are helping people heal. It is well understood that it takes concurrent multifaceted approaches to treat ME/CFS. http://batemanhornecenter.org/wp-content/uploads/2016/02/MECFS_FM_Treatment_Advice.pdf https://www.youtube.com/results?search_query=Lucinda+bateman+youtube
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
You need to review what research is actually going on in order to find the gaps. There are some major research organizations which will help you write a more accurate and up to date report. I would highly recommend you contact one of these people to get an accurate picture of what is happening in CFS research: Lucinda Bateman Lucinda Bateman headed the year long committee that wrote a huge IOS report for the US government on the current state of research on ME/CFS. 1-801-359-7400 | support@batemanhornecenter.org 24 South 1100 East, Suite 205, SLC, UT 84102 Simmaron Research, an umbrella company funding many individual US ME/CFS research programs. They will know the research gaps. Address: 948 Incline Way, Incline Village, NV 89451 Phone: (775) 298-0030 Fax: (775) 298-0031 Email: redefiningmecfs@gmail.com Jared Younger who runs a university research department. He has some exciting new studies out. He will know all the research going on. Email: youngerlab@uab.edu Phone: (205) 975-5907 Nancy Klimas, She runs a neurology research lab in Floridahas a successful movement and weights protocol for CFS deconditioning based on VOX testing. (She has nothing good to say about GET) INIM Research Studies Tel:305-275-5450 Email: INIMresearch@nova.edu Cort Johnson writes a blog for the community on the latest research. He has deep insight into the ME/CFS community. He would be a most excellent contact for an overview. CONTACT HERE: https://www.healthrising.org/contact-us/ His work can be found in these places: http://simmaronresearch.com/simmaron-rising/ https://www.healthrising.org/ And here are some of the most important research websites. I am sure there are more. http://batemanhornecenter.org/category/research-news/ http://igenomed.stanford.edu/index.php/2016/10/13/research-tests/ https://cas. uab.edu/younger/research/ https://www.nova.edu/nim/research/research-studies.html http://simmaronresearch.com/sr-research/ http://med.stanford.edu/chronicfatiguesyndrome/research.html https://research.cornell.edu/research/chronic-fatigue-syndrome-mecfs
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Strongly Disagree
Comments: How could the recommendations be improved?: 
There is a deluge of recent helpful information that your report does not cover. You mention the doubts and skepticism of the past but researchers are agreeing on a coherent picture and you reflect none of that in your report. Your report feels dated in outlook. http://simmaronresearch.com/2017/08/major-stanford-study-indicates-chronic-fatigue-syndrome-mecfs-is-inflammatory-disorder/

Page reviewed: 23 September, 2019