New Research on Chronic Fatigue Syndrome
The latest research on Chronic Fatigue Syndrome has it linked to a cancer-causing retrovirus…
Last week I was reading a lot about the latest research linking Chronic Fatigue Syndrome (CFS) to the XMRV Retrovirus. Some of the articles even implied that people suffering with CFS (like myself) should be excited at the possibility that this news could lead to better diagnosis and treatment of CFS. But, it’s not exactly good news for CFS patients, especially for patients hoping for a cure. Here’s why…
While finding a virus linked to CFS may sound promising – Just cure the virus and you cure the disease. It’s much more complicated than that. The virus being linked to CFS is a retrovirus, it’s not the sort of virus we can just throw some anti-viral medicine at to get rid of it. It’s a complicated process, but it goes something like this – Ordinary viruses attack a cell and eventually kill it during it’s process of spreading to other cells. Retroviruses don’t just spread they also mutate the cell (without killing it), so mutated cells go on to replicate and spread the virus as well as the cell mutations. So the cell mutation part is what makes this type of virus more difficult, and why we are hearing it compared to the HIV virus (another retrovirus). But this is only one study, there will need to be many, many more studies before we have any definitive answers.
While I appreciate the fact that CFS is finally getting the attention it deserves, there is still a lot of research to be done. This retrovirus finding is a very important “key” to unlocking the truth about this debilitating disease. However, I don’t necessarily see it as the smoking gun. Granted, I’m not a scientist, but I do have my personal experience with this disease (and the medical background of a nurse), and this is my first impression about these latest findings…
Chronic Fatigue Syndrome is a disease that (among other things) weakens a person’s immune system. So this finding of a specific retrovirus being found in a large number of CFS patients is a classic “what came first the chicken or the egg” scenario. Did the weakened immune system create the perfect petri-dish for this virus to exist? Or did this virus contribute to the weakened immune system? The bottom line is – There is much more research that needs to be done before we can get the answers we are looking for. I do hope that these new findings can at least put to rest any idea that CFS is “all in the head” of the patient.
I actually had a neurologist tell me a few years ago (to my face) that he did not believe in my diagnosis. If that’s not bad enough, when I called him on it, and asked if he thought my symptoms were all in my head…He told me that I probably had MS (multiple sclerosis) and it just hadn’t been able to be diagnosed yet. What? This “so called” medical specialist was so against acknowledging that chronic fatigue syndrome could exist, that he actually had the nerve to “pre” diagnose me with a condition that I had already been tested for and told I did not have. Explaining that “if” my symptoms were real, then I would have to eventually be diagnosed with a “real” disease. I’m not a violent person, but I REALLY wanted to punch this man freak in the face…I think he graduated from the Doctors for Dummies School of Medicine (and that’s all I’ll say about that).
OK…Sorry for the rant, I’ll get back to my feelings on this latest research now.
Don’t get me wrong, I am ecstatic that there is finally some actual scientific research being done on Chronic Fatigue Syndrome. I was beginning to wonder just how long doctors would be allowed to get away with making personal judgments on whether or not to “believe” in a CFS diagnosis (a diagnosis that is already accepted by the AMA and CDC).
I hope these latest finding will (at the very least) help educate both the public and the medical community, that this is a real disease with real symptoms that need to be treated–not ignored. This is from a statement I wrote for the Chronic Fatigue Syndrome Advisory Committee that met in Washington D.C. (in May of 2007), and I believe it is still relevant today…
Being a single mother is not easy under any circumstances, but being a single mother with Chronic Fatigue Syndrome has been particularly difficult. I have been suffering with this insidious cluster of debilitating symptoms (referred to as Chronic Fatigue Syndrome), for over ten years. But it has only been more recently that I have come to accept that this condition isn’t going away. The funny thing is, even though I am caught in the middle of mourning for the person I might have been, and accepting the person I am, I’ve begun to feel hopeful. Hopeful because, by letting go of the burden of needing to be cured, I am also letting go of the idea that if I just got more sleep, or got more exercise, or took the right combination of medications, or found the right doctor, that somehow I would be better. This thought process is exactly what keeps someone with Chronic Fatigue Syndrome down. It puts a judgment on them, that they are somehow responsible and this is not true. So, letting go of this type of destructive thinking is half the battle with this disease. And I think that is why this type of awareness (that is being done here today) is so important.
I believe we can all agree on the importance of research so that a diagnostic tool can be found, and a treatment developed. However, what is equally important, but continues to be overlooked, is the acceptance by doctors that this is a “real” medical condition and not an “emotional” problem.
Are many people with Chronic Fatigue Syndrome depressed? Of course they are. Anyone suffering from a chronic debilitating medical condition, is most likely going to have some degree of sadness, anxiety, or depression associated with it. A physician wouldn’t dream of telling a patient with Lupus that depression is the cause of their disease, but surely there are many patients with Lupus who are also depressed. And by all means, depression, whether associated with Chronic Fatigue Syndrome, or any other medical condition, needs to be addressed and treated. Depression is a symptom associated with this disease, not the cause of this disease. By “blaming” this disease on depression, or any other “emotional” disorder…Well, that is simply “blaming” the patient for their disease, and that couldn’t be farther from the truth.
The truth is, doctors become doctors for the same reason I became a nurse, so they can help people. And, I think doctors feel helpless when they have a patient that they can’t “fix.” Herein lies the problem. Patients can not, and should not have to WAIT to receive compassion and treatment from their doctors, until scientific research has found a way to cure them. Just as I have come to accept my condition, doctors must come to accept this condition and treat the patients and their symptoms accordingly.
There is so much a doctor can do to help a patient with Chronic Fatigue Syndrome. The most important is to accept them and their diagnosis. Don’t tell them you don’t believe in the diagnosis. What purpose does that serve, other than to degrade them? Second, do not pass judgment on the patient for their condition. Treat patients with Chronic Fatigue Syndrome the same way you would treat anyone else with a chronic medical condition, with respect and dignity. We are not just patients with Chronic Fatigue Syndrome, we are human beings. Third, work together with the patient to address the specific symptoms of their disease. It doesn’t matter what you call this disease, a physician CAN treat the patient and their symptoms regardless of what the name of the disease is. A physician CAN treat the patient and their symptoms regardless of whether research has found a cause or cure for the disease.
These are simple things, that could be implemented right now. Today is what matters to us. Today is all any of us have. Help us get through today, then tomorrow, and then help us take one day at a time towards being as well as we can be, given our disease. If you can do that, you will be making a huge difference in our lives… Anything less, is tantamount to “doing harm”. So please – Do No Harm – that is all I ask.
So…That’s what I think about it, and I’ll step off of my soap-box now. I would love to know what you think in comments.
Here is a video from the 2006 Awareness Campaign by the CDC designed to inform physicians on the treatment of patients with CFS (obviously my neurologist wasn’t in attendance)…
*cross-posted at BlogHer Health & Wellness and Living With Chronic Fatigue Syndrome
Comments
Comment from Catherine Morgan
Time: October 25, 2009, 7:00 pm
Thanks for all the information John.
Comment from John
Time: October 25, 2009, 1:03 pm
(Note- I’m a CFS patient, so if I come across as snarky, it’s not towards you, it’s simply due to the subject matter.)
CDC’s CFS Research Program(CCRP) believes CFS to be psychoneurosis and pretty much always has(1). They have written an extended concept of CFS being the result of something called ‘altered interoception’, which in layman’s terms is a normal healthy person who simply pays too much attention to everyday bodily signs, aches and pains, etc. and falsely interprets these as signs of disease. Say it again with me CCRP, it’s not that hard- psychoneurosis.
They can’t call it psychoneurosis of course, because they know they’d get run out of town if they did so they couch their diagnosis in a plethora of inane and obscure(if not outright made up) words and phrases such as the aforementioned ‘altered interoception’, ‘allostatic load’(according to CCRP, allostatic load is the ‘cumulative buildup of stress experienced over a person’s lifespan’), ‘a complex illness representing alterations in multiple ecologically and biologically interrelated homeostatic systems’, blah blah blah, etc. CCRP has been reprimanded multiple times for just this type of “glossy but meaningless language”(2,3).
Even CCRP researchers themselves are at odds on some of the basic fundamentals of their convoluted theories. While one CCRP researcher, James F. Jones, is giving hospital Grand Rounds on CFS during which he speaks on ‘the concept of allostatic load’, calling it “a concept called allostatic load, which is supposedly your lifetime stress”, and “allostatic load, I don’t know how much you all are doing with, or how much anyone is making sense out of allostatic load”(4) and with one of the questions from the audience of physicians mentioning how they had never even heard of ‘allostatic load’ before, suggesting just how hypothetical this theory is, meanwhile the head of CCRP, Bill Reeves, is going around speaking at official government meetings and on Georgia public tv stating that not only is allostatic load “a physiologic marker” of accumulated stress, but that it’s actually measureable in the blood of patients!(5,6)
Bill Reeves is also on record(7,8,9) stating CCRP believes CFS to be an ‘illness’, as opposed to a disease, which affects the ‘female gender’, as opposed to the female sex, which is commonly noted to be more prone to autoimmune disease, MS, etc, and which possibly results from ‘women being treated differently in society than men’.
CCRP is in constant collaboration with psychiatrists and psychologists from the UK and the Netherlands who are also of the belief that CFS is a behavorial disorder and not a disease. CCRP is also planning as part of it’s 5 year plan to establish Cognitive Behavorial Therapy and Graded Exercise Therapy(CBT/GET) trials, with CBT being used to try and rehabilitate patients ‘faulty illness beliefs’ combined with ‘phobic avoidance of exercise’, ie the patient’s belief that they are actually sick instead of suffering from the behavorial disorder the CBT therapist believes them to be.
In fact Gijs Bleijenberg, frequent CCRP collaborator, in a letter to the Lancet showed just how different CBT for CFS is when compared to how it is used in other chronic illnesses in which CBT is used as a supportive therapy meant to teach the patient to learn how to live with a chronic disease and modify their behavior accordingly and not as any sort of primary treatment with an intent to ‘cure’ the patient. According to Prof. Bleijenberg CBT for CFS is indeed meant to be ‘curative’, specifically by altering the patient’s aforementioned ‘abnormal illness beliefs’ and with the final step in this ‘cure’ being the patient ‘ceasing to label themselves as suffering from CFS’!(10) Put that in your pipe and smoke it!
It should be noted that contrary to his assertions of cures, Prof. Bleijenberg has never reported any sort of objective outcome measure for his CBT/GET trials such as actometer data, as neither have any CBT/GET trials done as of yet.
In fact, in a 2001 CBT study(11) which Prof. Bleijenberg was a part of and which was published in the Lancet, the authors did take actometer data but when the data was analyzed and patients showed no improvement in activity levels when compared to controls the authors simply omitted including the data in the published study while going on to declare the study a success with the actometer data in question only coming to light as a result of a Netherlands’ government study on CFS which was published several years later.(12) Tut tut!
Why this is allowed to go on is a matter of some puzzlement. Not only has the Chronic Fatigue Syndrome Advisory Committee(CFSAC), which you mentioned in your article, unanimously recommended ‘progressive new leadership’ at CCRP, this recommendation was also given by the IACFS/ME, the largest CFS/ME professionals group in the world as well as the nation’s largest patient charity, the CFIDS Association, though I’m not sure if CFIDS Assoc. has stated it in the public forum or not. From what I’ve seen, they just echoed what the other two said.(13,14)
You got any more questions I’ve got a (*&* ton of answers.
1. ‘Dear Sirs, I am sick…’
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0910B&L=CO-CURE&P=R5819&I=-3&X=56AD8B3B2F426181CD&Y
2.”…jargon and undefined terms”, “…glossy but meaningless language”
From CFIDS Association’s response to CDC’s 5 year plan- http://www.cfids.org/temp/research-plan-response.pdf
3.”I find the manuscript very unclear in describing the goals of the research, the methodology, and the results.The authors need to much more precisely describe the work. This means giving it more structure, and carefully defining its terms and then using those terms with absolute consistency.”
From peer review of ‘Chronic fatigue syndrome – a clinically empirical approach to its definition Title: and study’ -2005
http://www.biomedcentral.com/imedia/1971794881730472_comment.pdf
4. James F. Jones, CCRP, presenting Grand Rounds at Univ. of Arizona Health Sciences- OB/GYN
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0909A&L=CO-CURE&P=R3247&I=-3&X=516959382AE060A4F6&Y
5. “People with CFS also have about a six-fold excess of allostatic load—a physiologic marker of accumulated stress and inability to adapt to it over a lifetime.”
Bill Reeves, CCRP Program Leader
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac071128min.html
6. Dr. Reeves: Ok we’ve looked at that with questionnaires and we’ve looked at the cumulative stress with a measure called allostatic load.
Host: What’s that in layman’s terms?
Dr. Reeves: In layman’s terms when you react to stress, every time you react your body reacts chemically. And that accrues, it builds up over time.
Host: And you can actually look at blood work that shows you how much has built up?
Dr. Reeves: You can look at blood work that shows you how much that builds up.
http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm
7. “We look upon CFS as a complex illness, not as a disease. Diabetes is a disease with metabolic pathways involved. CFS is an illness from which various diseases spring.”
William C. Reeves, CCRP Program Leader
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac070516min.html
8. “The data pose a pivotal question: Are the results due to sex (the fact that women have two X chromosomes and men have one X and one Y—primarily a genetic influence) or do they reflect gender? Gender is described as women’s role in their particular racial/ethnic group and society; the ways in which they have to function differently because they are women.”
William C. Reeves, CCRP Program Leader
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac071128min.html
9. Host: Sidenote, you said that there’s higher numbers in the rural areas than you expected.
Dr. Reeves: There were- actually not higher numbers in the rural areas, we asked the question about women.
Host: Ok.
Dr. Reeves: Ok women are very high risk.
Host: Ok.
Dr. Reeves: And women are women because of their sex.
Host: Right.
Dr. Reeves: Women are treated differently in society than men are.
Host: Ok, so wait, I was wrong though about the rural, I thought you said-
Dr. Reeves: It’s gender. What was different in metropolitan and rural is 5 times as many women than men in metropolitan areas have it, twice as many men as women have it in the rural areas.
Host: Huh.
Dr. Reeves: And that is beginning to get us to look at is there something different in the stress patterns of men and women in those areas that account for that difference. Rather than it’s women sex; women or men’s roles and how they’re functioning in their different parts of society.
http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm
10. “We agree that this treatment may not be a cure for all CFS patients, but it certainly has been for at least 35% of those who fulfilled the stringent criteria for recovery in our trial. Recovered patients returned to work and other activities. Everyday bodily signs and symptoms were no longer interpreted as indicating CFS. Most importantly, these people no longer labelled themselves as having CFS. If this is not cure, what is?” -Gijs Bleijenberg, frequent CCRP collaborator
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)08577-X/fulltext
11. ‘Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial’
http://www.ncbi.nlm.nih.gov/pubmed/11265953
12. Van Essen, M and de Winter, LJM. Cognitieve gedragstherapie by het vermoeidheidssyndroom (cognitive behaviour therapy for chronic fatigue syndrome). Report from the College voor Zorgverzekeringen. Amstelveen: Holland. June 27th, 2002. Bijlage B. Table 2. p. 57.
13. Recommendation # 1- Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.
http://www.hhs.gov/advcomcfs/recommendations/05272009.html
14. “It is the opinion of the Board of the IACFS/ME that the current 5 year strategic plan provided by the CDC is unattainable, misdirected, and oblivious to the significant progress and accomplishments made by the extramural scientific and medical CFS community.
Recommendation #1- The CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community.”
http://74.125.95.132/search?q=cache:Cz9iG0fIZ4YJ:www.iacfsme.org/+iacfs/me+cdc+5+year+plan&cd=1&hl=en&ct=clnk&gl=us