Dr Fred Friedberg, president,
IACFSME
Subject: New Announcement
Dear sir,
My name is Kati D I am a patient with ME since November 2008.
I was then a registered nurse, and my health status changed forever
following a primary EBV infection. I never recovered. It got worse
with a bad case of necrotic gallbladder some 4 months later, and my
symptoms just worsened from there. My family physician could not
explain why I was not recovering from my surgery and felt I was
depressed. “This is how you treat chronic fatigue”, she said.
I certainly understood my diagnosis more than she did, and I quickly
learnt from my peers that the chest pain and shortness of breath were
not benign and that I needed to be horizontal as much as possible.
This
week I have learnt from your press release that the international ME
association who gathers the best scientists in the field will publish
a quarterly peer reviewed journal called “Fatigue: Biomedicine,
Health and Behavior”. It is with dismay that I am writing to you,
trying to understand why the IACFSME desires to perpetuate the stigma
of fatigue in ME patients, and continue studying fatigue both
biologically and psychologically.
Fatigue
exists in other diseases. AIDS, cancer, MS, lupus, cardio-vascular
patients all experience fatigue to varying degrees. However, fatigue
is addressed by treating the root cause of the disease, through
anti-virals and anti-retrovirals, cardiac surgeries and cardiac
drugs, chemo agents. In the case of ME, scientists have not yet found
a biomarker or cause of the illness, but the work of several
scientists, notably Jonathan Kerr, Nancy Klimas, Dr Lerner, Montoya,
Peterson, etc have given some important leads. We need more work.
I
and several of my fellow patients who are awaiting for treatments,
are worried that a journal about fatigue may not be the right
direction, and wonder how this came about- and whether this has been
initiated by others who may not understand our disease well or may
have an agenda other than finding biomedical treatments for patients.
As
you may understand, patients with AIDS, cancer, MS, lupus and the
like, are not helped by cognitive behavioral therapy, but usually
improve with proper biomedical treatments. Why are patients with ME
so different and need to be subjected to CBT and GET, and subjected
to clinical trials on that regard, and why is IACFSME planning to
host these authors in this new journal called Fatigue?
I
haven't signed up for this illness. I am particularly ashamed today
to have such illness that doesn't have recognition, respect, and
credibility from most physicians, but worse, it seems that IACFSME is
following the steps of those who have stigmatized us for the last 3
decades, notably the CDC.
I
am sick, not tired.
Sincerely,
Kati D, British Columbia, Canada.
Currently receiving Rituximab for this disease.
brilliant Kati
ReplyDeleteand it is another slap in the face for all of us.
brava Kati
ReplyDeleteDid you read dr. Enladers response? On FB by xmrv global. I was extremely disappointeled. Wonder if I can blog from my phone & reopen mine or start new before I am dead in my bed
ReplyDeletePpl could copy some if this and forward to dr F those that ate able. CFS united aka khaly posted a good response ,read johns as well can't type often.
I'm sorry I don't know the syndrome that is being discussed here. But I have fibromyalgia & the fatigue
ReplyDeleteIs horrible. I struggle to keep moving, & if I don't my
Pain is worse.being fatigued also causes weight gain, besides the pain.
What I'm asking is while you're researching ways to help fight the fatigue, will it also offer help for fibromyalgia & some or the other illnesses mentioned??
The new journal is already raising patient ire and resulting in some snap judgments based on speculation. The following comments are intended as simply a way of stepping back and taking a second look at issues that have been raised and some that have not.
ReplyDelete1. First of all the IACFS/ME is not an advocacy organization - it is a conservative organization of scientists, educators and clinicians representing many different points of view. Many of them do respect patients as the experts on their own experience.
2. It is crucial for this journal to be peer-reviewed. This will raise its standing in the scientific community and a with a much broader readership. This is a good thing.
3. Dr. Jason and other researchers recently published a paper on standards for researchers reporting how ME and CFS cohorts are defined etc. http://www.ncbi.nlm.nih.gov/pubmed/22306456 Will the editors of this journal enforce this?
4. Fatigue like pain is poorly defined and studied and there is much work needing to be done in this area. There are many ways to look at both pain and fatigue including from a biomedical viewpoint or a behavioral standpoint - the issue isn't the point of view but its appropriate application.
Comparing say PEM to other forms of fatigue in other diseases is important. For example, I can envision papers that specifically compare and contrast the PEM of ME with other forms of fatigue in other diseases such as MS and cancer. That would be useful. Perhaps PEM should be compared and contrasted with the mild tiredness of depression using the Steven's protocol if only so people other than patients understand the difference and the pitfalls of assuming they are equivalent.
5. Behavior and psychosocial issues are part of every single disease on earth including ME and this research is done on every single disease not just ME and CFS. However papers with well defined cohorts like the Lopez et al 2011 study are important because they offset inappropriately applied research and instruments. CBT and GET don't cure any diseases, they are not disease specific and although occasionally a useful tool depending on individual circumstances. For these reasons they should not be the only tool in the toolbox.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3073706/?tool=pubmed
6. Dr. Komaroff has stated that researchers and clinicians in other diseases are mainly unaware of the actual body of research in ME and CFS. By bringing in "new blood" would the journal interest and inform professionals who might not otherwise become better educated about ME and CFS? Many of the leading researchers in the field are currently pushing retirement age and beyond - what happens when there are fewer and fewer researchers interested in taking their place?
6. Circling back to my initial comment about pain not being well understood either. Some of the pain journals publish both biomedical and behavioral research aspects, the research also spans many diseases and forms of pain. This journal may have the same potential.