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The Name Game and Chronic Fatigue Syndrome: DSM-5 Revisions Should Be Openly Debated

The Name Game and Chronic Fatigue Syndrome: DSM-5 Revisions Should Be Openly Debated

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chronic fatigue syndrome, dsm 5, psychiatry, mental health, william heisel, mary schweitzer, reporting on health

Mary Schweitzer writes a blog called Slightly Alive that takes its name from a

bit of dialogue in The Princess Bride. With a droll wit and an acute eye for medical detail, Schweitzer tries to give voice to the millions of people who suffer from difficult to diagnose health conditions, such as chronic fatigue syndrome (CFS). She was an associate professor of history at Villanova University before a prolonged illness forced her to quit in 1994. As she described to me:

I have been diagnosed with CFS (chronic fatigue syndrome) and re-diagnosed with myalgic encephalomyelitis (ME). I have immune defects and several sub-acute, active viruses, plus three strains of coxsackie B. That goes along with significant cognitive and neurological impairment. At one point I could not brush my own teeth and spent most of my time lying in a dark room listening to favorite movies.

Schweitzer sent me a note after I wrote about Suzy Chapman of the blog formerly known as DSM-5 and ICD-11 Watch. This debate about the revisions to the DSM-5 is so contentious, and I am such a novice when it comes to mental health, that I don't have a clear idea of the best way for the American Psychiatric Association to revise its manual and incorporate critiques from Schweitzer and others. I found Schweitzer's ideas so compelling that I asked her to write a guest post. There may be good reason to alter the framing around chronic fatigue syndrome and other conditions, but if critics are going to be silenced, or even just ignored, it could be hard for people to have faith in the eventual outcome. Schweitzer's post is below:

The very thought that the American Psychiatric Association is attempting to protect a "brand" by going after DSM-5 Watch is appalling.

Last time I looked, the APA portrayed itself and the discipline of psychiatry as a scholarly activity. There can be no scholarship without criticism, and there can be no criticism without reference to that which is being criticized.

The deep secrecy which has enveloped the fifth revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is itself a violation of professional ethics. The process around revising and updating the DSM should be an open process, as the content affects so many people's lives.

What could have possessed the APA to use its weight instead to censor a website offering information and intelligent criticism?

There is a growing concern that the discipline of psychiatry has been grabbing more and more territory for itself. When presented with a complex set of symptoms, psychiatry could answer honestly, "we just don't know." Instead, it adds more and more diagnoses to the list of "mental disorders."

Does the psychiatric profession really want to play that role?  "I don't know what's wrong with you. It must be psychiatric." Could some of these problems being labeled as "mental" have a different cause?

With the last revision of the DSM, DSM-4, there was a lot of criticism (and jokes) about suspect diagnoses. I thought the discipline (in the United States at least) had done a good job in the last two decades of redeeming itself.

But lately, suspect diagnoses from overseas have been creeping in. When Munchausen Syndrome by Proxy was abandoned as a serious diagnosis in the U.S., it was all too quickly changed to "factitious Illness by proxy."

There is now a group of psychiatrists who are pushing "factitious illness" and the new diagnosis of CSSD - Complex Somatic Syndrome Disorder. CSSD fits the definition of CFS created by Dr. Keiji Fukuda and colleagues in 1994 uncomfortably well. A key aspect of both definitions is that in order to have this disorder, you have to have more than four symptoms.

Name changes are nothing new to suffers of ME/CFS. The disease was called atypical polio for 20 years. Then in the 1950s, it was renamed myalgic encephalomyelitis (ME) and as such has been coded under neurology in WHO's ICD's since 1969. ME also has been a diagnosis used in the United Kingdom and British Commonwealth nations for 55 years.

Initially, the U.S. chose a different name, epidemic neuromyesthenia, but that term fell into disuse by the 1970s. When clusters of cases began to occur in the mid-1980s, U.S. doctors had no name for what they were looking at. Had the outbreaks occurred in Surray, England, however, the patients would have been diagnosed with M.E. In the U.S., the term CFS became dominant.

It may seem trivial to those who don't suffer from ME/CFS, but names do matter. And this name change is particularly important. If this faction of psychiatrists is able to create a CSSD definition in both DSM-5 and ICD-11, they will have succeeded in diverting attention away from a root medical cause for conditions such as ME/CFS and in putting those conditions and other squarely in the realm of psychiatry. This has implications not only for helping ill people get well but also for how insurance companies are going to assess the associated costs. For a change like this to be made, the public should be made very aware of the evidence and the process of evaluating the evidence.

I was a very productive researcher before becoming ill, and my career was on the rise before it was cut short at the age of 44. I am very serious about the absence of scholarly ethics in this entire process. I take scholarship seriously. It was my life. My father was a professor. My husband is a professor. It's kind of the family business.  

Who gets hurt by the type of silliness now happening with APA's threats against Suzy Chapman?  Aside from the hit that psychiatry takes to its own integrity, the weak in society are the most vulnerable: the poor, children, and in the case of psychiatry, women. Heavily gender-biased diagnoses are all too common in psychiatry. Factitious illness by proxy, for example, is almost always blamed on Mom.

A medical manual should be a compendium of evidence from peer-reviewed literature and established best practices. It is no place to try out new concepts.

If psychiatry wishes to retain its standing as a scholarly field based on scientific research, the hijacking of diagnoses by a closed cabal must not be permitted. Period.

Related Posts:

Slap: American Psychiatric Association Targets One DSM5 Critic, Ignores Others

Slap: American Psychiatric Association Pressures Brit DSM5 Blogger Suzy Chapman

Autism Diagnosis: About That DSM 5 Story

Changing the Definition of Autism: A National Debate Heats Up

Photo credit: anoldent via Flickr

Comments

Picture of Karen Lambert

I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFIDS and NON-HIV AIDS are basically the same mysterious immune disorder.

 

Whatever I am currently dealing with, it strongly resembles classic textbook HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of CFS.

 

Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFIDS/ME and AIDS. Most people with CFIDS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious CFS than to be told that they have AIDS.

 

Anyone with CFIDS, who does not consider the possibility that CFS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness.

 

Why isn't CFS/ME a reportable disease overseen by our public health department? Why are ME and CFS (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?

 

Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFS/ME is Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic ---> TENFOLD.

 

To learn more about non-HIV AIDS, and to see the *new* face of AIDS, please visit: 

www.cfsstraighttalk.blogspot.com

 

Could I be you?

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The strong arming by DSM-5 is not limited to bloggers. It includes the exclusion by psychiatry of other disciplines like psychology and social work, an enforced process of secrecy and lack of transparency which is anathemical to the academic process, and professional threats and intimidation to other psychiatrists not involved directly in the process for making comments or criticising the process, including people in academic psychiatry such as myself or Danny Carlat.

Picture of Karen Lambert

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS) is not a disease. CFIDS is a syndrome, as its name suggests.

 

Acquired Immune Deficiency Syndrome (AIDS) is not a disease. AIDS is a syndrome, as its name suggests.

 

Neither CFIDS nor AIDS are diseases. A syndrome is a syndrome.

 

Myalgic encephalomyelitis (ME) is a disease, just like MS or malaria.

 

CFS and ME are not the same (one a syndrome, the other a disease). CFS/ME terminology is not interchangeable, and is not accurate.

 

CFS (syndrome) patients like to align themselves with ME (disease) patients because it helps give our syndrome the dignity and respect that it currently lacks (i.e., due to the silly, belittling name our government labeled it). I coined this phenomenon 'disease envy.'

 

I don't entirely disagree that CFS patients should do this. CFS patients have to understand, however, that we are stealing the name of a legitimate disease, ME. This is the reason why ME patients typically don't like to be lumped in with the CFS patients, because CFS patients' dilute the meaning of ME's very well-defined disease. I don't blame them. If I were a ME patient, I wouldn't want a CFS patient lumped in with me either.

 

If you are a CFS patient and your doctor has not diagnosed you with ME, then you cannot arbitrarily decide that you have ME (e.g., I am a CFS patient, and I am far sicker than most ME patients that I know, so what difference does it make?). Although both illnesses have the same gravity, they are not the same diagnosis. There is currently a massive initiative to get CFS (syndrome) patients properly diagnosed as ME (disease) patients. Simply look-up: "ME ICC vs CFS Fukuda." You have to acknowledge however that not all CFS patients will quality for a ME diagnosis. I repeat CFS/ME terminology is not interchangeable, and is not accurate.

 

I see the big picture as to why CFS and ME terminology should not be severed (at least until the initiative is complete), as there is a high correlation and probable same causal pathogen shared between the two maladies. Allied government (political) simply named us two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response.

 

Allied government sold-out global public health for the sake of profit.

 

AIDS and CFIDS (both syndromes) are 100% political paradigms.

 

www.cfsstraighttalk.blogspot.com

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A syndrome is defined as a group of symptoms without a known viral/bacterial/... cause.
A disease is defined as a group of symptoms with a known viral/bacterial/... causes.
AIDS is to day known to be caused by HIV, and is therefor a disease, ME and CFS etc. does not have a known viral/bacterial/.. cause and are therefore syndromes.
A disease is therefor a syndrome until the cause is known, and for CFS/ME I believe the genetic change in the b-lymphocytes proved in 2012 will change the syndrome to a disease within 1-3 years.
So it's not more serous with a disease than a syndrome, and syndromes easily get split up with several names until a bio-marker is known.

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After 4 years of battling ME without any diagnosis and finally getting a diagnosis I started d-ribose. After 10 days of taking d-ribose regularly every 4 hours I no long have severe chronic fatigue. A year on and I have not had severe chronic fatigue again. I have had fatigue but that is only when I have not taken d-ribose. It enables oxygen to get into the heart muscle and muscles of the body and for me has stopped the severe fatigue. It works only if I take it regularly any time I have stopped taking it I have reverted to being very fatigued. Dr Sarah Myhill's research on mitochondria failure and d-ribose saved my life and has given me hope that I can gradually recover from M.E. It is the most horrible disease and so frustrating given the ignorance of so many health professionals in the area of care and support for someone with M.E. I am healing and also keep a strong gluten free and diary free diet regime with lots of whole foods and no sugar. This I started 3 years ago and has also helped to reduce the pain. Amazing what diet can do to heal. I hope that my testimonial can give people hope that they can improve their quality of life and possibly recover. My Dr has even suggested I do not have the disease for the fact I don't have diagnosable chronic fatigue anymore and if I watch my diet I generally don't have fibromyalgia. It is a long process I have found turning the clock to heal and it does take effort but these steps and incremental change have given me back my life, my marriage and family and hope that I might live to a ripe old age. I am so grateful for this second chance on life with d-ribose. Please look into Dr Sarah Myhill's research on mitochondria failure and d-ribose. D-ribose must be taken regularly to work.

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