I've almost completely lost my faith in doctors. Two years ago I went to my general md with excruciating pain in my stomach. Also all my lymph nodes hurt and were swollen. He looked at the results of my colonscopy, uterine biopsy and blood tests and told me that there was nothing wrong with me, I was working myself into knots, and I was just depressed. He gave me two perscriptions for anti-depressant. He never touched me. I was lost as to what to do, had another uterine biopsy, and finally went back to my GI specialist. Guess what, I had IBS, gastritis and severe ulcers from a perscription anti-inflammatory another doctor had given me - 800 mg of Etodolac a day. Middle-aged women get written off - doctors used to call it "hysteria". I KNOW MY BODY AND I KNOW WHEN SOMETHING IS WRONG. I AM NOT INSANE.
I have posted the following additional note to Psychology Today as a part of the on-going discussion there.
==============
For all of those involved in discussing Somatiform Symptom Disorder and the DSM-V, I suggest there is a book worth reading if you can find it. Professionals may find it offensive, but it is very hard to ignore: Martin L. Gross "The Psychological Society ... the impact --and the failure-- of psychiatry, psychotherapy, psychoanalysis and the psychological revolution". (Random House, NY, 1978). Though no longer in print, the book can be found at used book stores and online at Amazon.
Gross offers carefully referenced and documented evidence that mental health practitioners have understood for fifty years. The so-called "talking therapies" have no positive effect on major psychiatric or psychological disorders (e.g. major or chronic depression, OCD, Borderline Personality Disorder, Social Anxiety Disorder, Schizophrenia, etc.). But STILL there are thousands of professionals who use such techniques and get paid for their presumed "services".
I see strong parallels between those who claim an objective reality for delusional fantasies like "conversion disorder" and those who practice talking therapies in the face of clear evidence that they don't help. There is simply NO medical evidence for the whole silly notion of "psychogenic pain". NONE.
As an on-line patient advocate, I daily deal with patients who have been marginalized, disregarded, emotionally traumatized and denied effective medical treatment for pain by their doctors. Many people are suffering because of the casual assignment of mental disorder labels by doctors who have grown frustrated with their own inability to diagnose or treat the problems presented by the patient.
In psychological practice, this phenomenon might be called "iatrogenic projection". Among laymen, it's called "blame the patient". And Doctors need to wake up and OWN their responsibility for the harms they have done by further victimizing those who have come to them for help.
The recent invention of Somatic Symptom Disorder out of thin air is only one more malpractice. And those responsible for creating this monster should be prosecuted in courts of law precisely on such grounds: negligent and willful malpractice.
Sincerely,
Richard A. Lawhern, Ph.D
AMEN RED!! THANK YOU!!!! You bring tears to my eyes because you really "get it." blessings~~
Red,
I’m wondering a bit if this group of um “doctors” has as yet a second hidden underlining to this fancey new way to label patients and write them off as a “head case”. If this sounds of a reach please tell me. Considering with the whole hysteria train that seem to gathering steam in regards to pain patients and the use of opiods. Also, no I am not advocating to the use of such strong medications here. With the DEA cracking down on prescription pain medications, groups such as PROP, the media using over doses as sensational new stories in order to get more of an audience, even states making or changing laws to try to combate the issues of the misuse of prescription drugs, and even ER’s changing their own use of this group of medication I left here wondering, wow! Did the group of “Doctors” just make it even easier for legitimate patients to have an even harder time to get the treatment they deserve for controlling their pain? Is the epidemic of drug misuse the sneaky little doctors whom don’t seem interested in treating patients just write everyone off with this? I can see an et doctor using this very quickly and this is horrible thought to have. I’m pretty sure there is also large and growing epidemic growing with chronic pain. People with chronic pain don’t ask for this, they just want help. We would do anything to take the pain or even settle just lessen it. Shoot I’d even eat off a public rest room floor if I thought that would at lest make the pain more tolerable. Instead of making up new ways for any chronic pain patient to get the help they need (even us head cases) maybe these doctors should be looking a little more deeply into health and science. It is when over confidence comes where man makes gross and huge mistakes, or even yet boredom. There is always more to learn. Making up labels like this is just stupid childish and sorry it reminds me of kids in junior high. These doctors really need to get out of their church pews and grow up. It is fine and dandy to say I’m sorry science has not gotten to point where we can help you or even say I’m frustrated on your care. Pain patients don’t expect a cure we just want help and this shoty piece of work just makes for an even more lazy medical field.
I wrote something to this effect on the Psychology Today site, but I think one must keep in mind the political context of the revision of the DSM. It seems possible that the development of this SSD diagnosis is likely a way to exclude more people from claiming to disability benefits. The likely treatment for SSD will be more cognitive/behavioural therapy and anti-depressants (anti-psychotics for "treatment resistant" cases). Any patient who refuses will likely be denied SSDI benefits as uncooperative with therapy.
This is exactly what has happened in the UK (where austerity reigns) with Chronic Fatigue Syndrome/Fibromyalgia. The National Health Service there has fallen under the influence of a group of psychiatrists who claim that these conditions are a form of somatoform disorder that can be fixed with CBT, graded exercise therapy, etc. This is despite the fact that many patients claim that these things only make them worse. We are clearly living through something like the decline of medicine.
Rosa and others,
One of the activists at Psychology Today was kind enough to post links to the DSM-V website and its component working groups. I am beginning work today to locate hospitals where the members of the SSM working group now work and practice. I intend to submit letters to the Boards of those hospitals, urging them to reconsider their relationships with people who are so evidently guilty of advocating for malpractice and patient mal-treatment. I will periodically report progress in this thread, and I welcome others who care enough to engage in similar efforts of protest.
See below (edited from correspondence)
The members of the DSM-5 Task Force and the members of all 13 DSM-5 Work Groups are available on the APA's DSM-5 Development site.
Task Force members here:
http://www.dsm5.org/MeetUs/Pages/TaskForceMembers.aspx
The members of the SSD Work Group are:
http://www.dsm5.org/MeetUs/Pages/SomaticDistressDisorders.aspx
Dimsdale, Joel E., M.D. [Chair]
Barsky III, Arthur J., M.D.
Creed, Francis, M.D. [UK]
Frasure-Smith, Nancy, Ph.D. (2007-2011)
Irwin, Michael R., M.D.
Keefe, Francis J., Ph.D.
Lee, Sing, M.D.
Levenson, James L., M.D.
Sharpe, Michael, M.D. [UK]
Wulsin, Lawson R., M.D.
If you go to the link and click on each name link, it will take you to a page for "biosketch and disclosure information" for each of the members. (This applies also to the members of the Task Force.)
If you go here:
http://www.dsm5.org/about/Pages/faq.aspx#5
then here:
http://www.dsm5.org/about/Pages/BoardofTrusteePrinciples.aspx
this sets out the APA's policies for COIs.
The following message (with appropriate edits for UK and Hong Kong members) has been sent to all of the medical professionals identified on the DSM-5 site as members or former members of the SSD Working Group.
Dear Doctor ______,
I am writing this letter as an 18-year online support specialist and advocate for chronic facial pain patients. I am a former webmaster and member of the Board at the US Trigeminal Neuralgia Association. I am currently a moderator and resident research analyst for Living With TN, serving 3500 members world-wide.
Through recent articles in Psychology Today, it has come to my attention that you are a participant in the DSM-5 working group that has proposed a new and exceptionally imprecise "Somatic Symptom Disorder". Dr Allen Frances, former chairman of your group, published an article on "Mislabeling Medical Illness As Mental Disorder". I consider his concerns highly credible. APA publication of such a delusional fantasy will create substantial harm for potentially hundreds of thousands of patients. The over-wide diagnostic criteria of the disorder will enable inappropriate labeling of patients with complex pain disorders as "head cases", effectively denying them medical care and marginalizing them as participants in their own health care management. This outcome is NOT acceptable.
I call on you to publicly disclaim your association with this medical malpractice, and to advocate for its removal from the DSM-5 prior to publication. The future credibility of the APA, your profession and your personal practice will be compromised substantially by this idiocy if it is allowed to occur. The SSD controversy reveals an incredible level of hubris, arrogance and insensitivity to both medical ethics and standards of evidence-based medicine. It may eventually get you personally sued or censured by your State Board of Medical Examiners.
I await your comments in response.
Sincerely,
Richard A. "Red" Lawhern, Ph.D.
Moderator, Living With TN
http://www.livingwithtn.org
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If any of you care to add your voices to mine in direct correspondence to these folks, the following are their names and email addresses, dug out of public sources on the Net:
Dimsdale, Joel E., M.D. [Chair] -- ■■■■■■■■■■■■■■■■■■
Barsky III, Arthur J., M.D. ■■■■■■■■■■■■■■■■■■■■
Creed, Francis, M.D. [UK] -- ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Frasure-Smith, Nancy, Ph.D. (2007-2011) [resigned from working group] -- ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Irwin, Michael R., M.D. -- ■■■■■■■■■■■■■■■■
Keefe, Francis J., Ph.D. -- ■■■■■■■■■■■■■■■■■■■■
Lee, Sing, M.D. -- ■■■■■■■■■■■■■■■■■■■
Levenson, James L., M.D. -- ■■■■■■■■■■■■■■■■
Sharpe, Michael, M.D. [UK] -- ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
Wulsin, Lawson R., M.D. -- ■■■■■■■■■■■■■■■■■■■■
======================
Suzy Chapman has also commented this morning, on: " Mislabeling Medical Illness As Mental Disorder"
Subject: Follow-up blog, today, by Dr Frances, MD
Today, Dr Frances publishes a follow-up to our December 8 commentary:
http://www.psychologytoday.com/blog/dsm5-in-distress/201301/bad-news-dsm...
Bad News: DSM 5 Refuses To Correct Somatic Symptom Disorder -- Medical Illness Will Be Mislabeled Mental Disorder
In this second commentary, Dr Frances reports on the outcome of his representations to the DSM-5 SSD Work Group.
Please keep the comments coming on this post but also for the new one. When circulating the link for this post, please also include the link for Dr Frances' new commentary.
We are particularly keen to reach platforms and advocacy orgs for patients with common chronic diseases and conditions - cancer, heart disease, diabetes, COPD, MS, RA; chronic pain, also chemical injury and rare diseases, as well as CFS, ME, chronic Lyme disease, IBS and Fibromyalgia.
=================
Regards, Red
Like everything a Medical Board likes to categorise everything into certain little headings. Their way of saying we don't know what to do. So its always comes back to mind or matter. I was a registered Nurse here in Australia and happened so many times to patients. Good example is Chronic Fatigue Syndrome. Had a 14 year old girl with this condition and they ended saying it was Psychosamtic. Which of cause it wasn't. Her parents went everywhere to get her treated and to numerous specialists. Finally got the correct name and treatment.
To me a lot of it is ignorance. They can't tell you why or what causes alot of disorders and diseases. So wrap it up neatly into a heading and push it aside.
Only problem is it is affecting someone somewhere. Their lives are changed forever. Just like TN does to us.
And then the shrinks would just say they were engaged in enabling behavior on behalf of their loved ones, co-dependency, etc. In fact, many shrinks won't spare doctors in this. Those doctors who they see giving patients "faulty illness beliefs" are just as culpable in their disorders as family members.
Its a no win situation folks. Whatever medical advancements occur, there will always be some conditions that fall outside of any recognized diagnosis and are invisible from any recognized diagnostic tests. What does society do with these people?
Wow! This is scary indeed. Thank you for being an advocate for all of us.
In a follow-up posting to Psychology Today, a public petition has been announced to the American Psychological Association, to delete SSD from the proposed list of disorders in the DSM-5. The petition can be found at http://www.change.org/petitions/the-american-psychological-association-and-dsm-5-somatic-symptom-disorder-ssd-is-too-vague-to-be-published-in-dsm-5?utm_source=share_petition&utm_medium=url_share&utm_campaign=url_share_before_sign&utm_source=share_petition&utm_medium=url_share&utm_campaign=url_share_before_sign
In signing this petition online, I have included the following comment: "I daily support an online community of 3400+ chronic face pain patients, many of whom have ALREADY been written off as head cases, by poorly trained or frustrated medical doctors who are ill trained in recognition of rare or complex pain disorders. SSD as a claimed disorder will provide a ready excuse for more of this dismissive behavior by medical doctors. SSD is a profound violation of the most basic principles of evidence based medicine and medical ethics in the principle of "first do no harm"."
I would welcome your company in co-signing the petition. Another that is similar in kind is being prepared for submission to the President through the website Whitehouse.gov.
Go in Peace and Power
Red
Thank you Red. I sign the petition for this.
Kari you are spot on! I have had to stand up for myself with several doctors trying to label me somatic. Besides not fixing my illness they have made my health worse. Post brain tumor surgery I started having seizures. One neurologist had me on 3 different AED's at the same time. I was so doped up and was stilling having seizures. Because of that stupid DR. I loss my job. Had my internal med Dr. tell me my excruciating left shoulder pain was somatic from stress. Went to a new Dr. He ordered an MRI of my neck and found 6 herniated disc in my neck! Dr's are worse with women over 40. Especially if you carry a little extra weight. Somatic disorder is also thought of first, especially when it is an health issue they don't know anything about. Dr's believe men more than an middle age women.
Kari said:
Big sigh. Thanks so much for this info. I hate saying this but I'm tired of this type of thought process from parts of the medical community. Not only is it a struggle to be in pain every day, and question your self at times on everything about your self; no matter what it seems we are having to fight to be treated as patients and not a "head case". I'm sorry but this news just has me at a loss of words. Wow! Depending on that I would be a total nut job because doctors can not put a finger on why I have what I have, or even prove that I have this craptastic disease because you can't see it. Really? Not only is this a horrible thought process but for some this may be damaging to the doctor patient relationship. I'm sorry but what this is cruelty to a large chuck of intractable pain patients every where. It's sad that any health care provider would even think to label any patient basically a head case because you can not actually see something.
Ill stop on this now before I say something horribly mean (such as any doctor who believes in any religion should then be labeled a head case because religions are based on faith. I know i could say so much worse. My apologizes to anyone I might of offended with that, that is not may intention or do I think that way, but sheese).
Today's follow-up note: I have posted a note to our sister community "Living With Lupus" in the Ben's Friends cluster of online communities. I encourage all of us to pass the word to our own doctors, and to ask them to engage with their professional societies and the AMA to advocate for the removal of SSD from the pending publication of the DSM-5.
Keep on 'truckin'... Regards, Red
Even if this change goes into effect, this doesn't mean doctors have to make this diagnosis, but doctors seem to very complicit in this tendency to marginalize pain of unknown origin as a psychiatric problem. What is going on in the culture of modern medicine that leads in this direction?
I have signed the petition Red.
where is the petition? I know it sounds dense but this thread is really long and my focus isn't ;P blessings~~
and yes, I know it's monstrous long... {:-)
Regards, Red
Signed and posted on my Facebook page. Thanks!! Blessings~~
Seriously, they should find something better to do, a better way. Of course, this will increase visits to psychologists...
It's not going to help out health care costs either if this goes thru...!!!!!!!!!