Immune Support has a new article about Fibromyalgia Myths: http://www.immunesupport.com/library/showarticle.cfm?id=8009
Like CFS, fibromyalgia is a neurologic, not autoimmune, disease. The real problem in fibromyalgia is a malfunction in the Central Nervous System that leads to improper processing of signals. It is not caused by psychological problems; it is not simply a case of depression; it cannot be cured with anti-depressants.
"Research studies have revealed a number of biological abnormalities, including:
- Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems experienced by Fibromyalgia patients.
- High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
- Low levels of nerve growth factor.
- Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
- Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
- Low levels of phosphocreatine and adenosine, muscle-cell chemicals.
Despite the scientific evidence, some medical professionals continue to dismiss Fibromyalgia as a psychological problem, insisting that the symptoms are caused by depression. The fact is that the percentage of FM patients who suffer with depression is no higher than for any other chronic illness. Unfortunately, since it takes an average of 17 years for new research to become part of mainstream medicine, we’re probably going to be fighting this myth for several more years."
Certainly, there are patients who, when faced with a massively life-altering condition like CFS or fibro, become depressed. Patients with other chronic or terminal medical conditions get depressed, too. Giving such patients an anti-depressant can improve their functioning by lifting the depression, perhaps enough to get them back to work, but the anti-depressant doesn't cure the CFS/fibro.
There are many CFS/fibro patients who are not depressed -- a series of psych experts over the past 20 years have repeatedly confirmed that I am one of them -- and we are not helped by anti-depressants. In fact, I've found they generally make me sicker.
But for those with concomitant depression, it's what I call The 10% Factor -- some patients, with a mere 10% improvement, are able to return to work. And then there are those at the other end of the spectrum, where a 10% improvement might allow them to brush their own teeth or feed themselves instead of having someone do it for them while they lie in bed helpless with paralytic muscle weakness. And a lot of us in the middle, where an extra 10% functionality might be the difference between eating preservative-laden TV dinners and having the energy to cook from scratch with healthy fresh ingredients, but isn't even close to being enough to get us back to work full-time.
Since standard blood tests don't detect malfunctions in the Central Nervous System, it's tempting for doctors to say "all blood tests are normal, you're just depressed", but the fact is, they haven't done the right tests to find what's wrong in CFS/fibro. That requires neurological testing; if your HMO rewards doctors for keeping costs down, he may not want to order such expensive testing when he can write "depression" in the records and be done with it. It may solve his problem, but it won't solve yours.
There are some fibro-specific drugs in the FDA pipeline. Since they're still unapproved, I haven't been able to get much information on how they're supposed to work (e.g., pain relief or chemical rebalancing), but that proprietary information will come out later. There is hope.
And hopefully when those drugs come out and are advertised as addressing a neurological problem, that will speed up the acceptance of the medical profession of the research showing that fibro is not depression.
On the CFS/ME front: "A national charity representing severely affected ME patients called for the MRC to stop completely any funding for research into ME that is not biomedical in nature. Simon Lawrence from the 25% ME Group said "If the funding available for cancer research was going towards researching the personality of patients rather than looking at the physiology of the illness there would be an outcry. For years the severely ill ME patients we represent have had to put up with the MRC refusing funding for biomedical research whilst it gives money to psychological research. ... It is totally unacceptable that a hugely important study looking at geneexpression in ME and which could lead to a diagnostic test, is being funded by patient groups whilst trials of psychological therapy are receiving millions of pounds."
Simon Lawrence pulls no punches when he says "Public money is being wasted on research that will be of no help to ME patients. It is about time serious money was spent on research into the pathology not the psychology of this devastating illness and high time that psychiatrists retreated to their own field of mental health and left ME well alone".
20 comments:
You know, after seeing these past two posts of yours ( and the vast number of comments they have inspired ) it would seem the answer to your dilemma is crystal clear - go to medical school, become a physican yourself. Then you could right all the percieved wrongs against you and treat CFS the way you think it should.
Oh but wait. You couldn't even get through law school, now could you?
So smart as you may think you are I guess medical school for you is out.
I guess the world will just have to wait.
I love when people like Skygaze make an arse of themself with their comments.
Karen can work only a few hours a week. Do you know of a medical school that has a program like that then? Those I know are quite rigourous and more hours than someone with CFS could endure. Or should she spend the next 50 years qualifying?
There are many doctors and nurses with CFS, even an invitation only group to discuss their same problem getting proper treatment.
Even Dr Groopman and his doctor wife had trouble getting proper treatment from their doctors. Read his book. Or do you not want to because you can't accept the truth?
You should read the many articles written by doctors and nurses with CFS. Being doctors and nurses doesn't get them the right treatment either.
If this blog annoys you, Skygaze, stop reading then. Your comments only prove you are a complete arse who don't know what you're talking about.
And I love it when people such as "craftwhatever" can't recognize sarcasm.
And oddly, it seems Karen never gets any comments save for when someone posts something she doesn't like.
Hmmmmmm...
This blog was brought to my and my classmates attention in a psych class. I won't say as WHY we were directed it, although to the average minded reader it is rather clear. It certainly was to us, I'll tell you that!
And why stop reading a site that continuously gives us laughs with its endless repetition of how the entire world is against the writer?
But - we do have a question perhaps Karen wouldn't mind answering (and perhaps dispel the conclusions we have already reached, although I doubt it) - following the time-line of the onset of your illness, and taking into account your age, why DIDN'T you complete law school? It certainly was way before you became ill.
Or let us hazard a guess - your instructors and professors were also against you.
Are we correct?
Skygaze writes: And oddly, it seems Karen never gets any comments save for when someone posts something she doesn't like.
There are many of us who read religiously but don't feel the need to comment on each post. Give us a reason to speak up and we will. Making accusations with no basis in fact will get you corrected.
Dave M gave you a good psychological analysis of your immature behavior in calling names when you can't counter a valid argument any other way. Brian told you the facts as he knows them to be true, not as you imagine them to be. Obviously being told your fantasies were wrong twice in a row didn't sit well with you or you wouldn't have made this comment.
There are You Go Girl comments throughout the blog which you don't acknowledge.
Skygaze writes: This blog was brought to my and my classmates attention in a psych class. I won't say as WHY we were directed it, although to the average minded reader it is rather clear. It certainly was to us, I'll tell you that!
I'm glad you were directed here by your instructor hoping you would learn something because that means that your instructor is likely reading your bratty comments and penalizing you for lack of compassion to a patient with serious health concerns.
Perhaps your instructor wanted you to learn that there is no evidence that CFS or fibromyalgia are psychiatric problems so that when you are dealing with patients you don't make the mistake of diagnosing them that way and instead correctly send them to a neurologist.
There are many reasons your instructor may have told you to read this blog but I'm sure his reasons didn't include giving you permission to childishly make fun of the author's problems.
Buzzzzzz. Wrong. The instructor's intent was to show evidence on how people with mental health problems could incorporate those problems with possible health issues and make it difficult for physicans to treat.
As med students, it is most enlightening.
Skygaze writes:
Buzzzzzz. Wrong. The instructor's intent was...
I thought you didn't know what the instructor's intent was?
Re-read the quote from Dr. Bastien, neuropsychologist, about how MEDICAL problems can masquerade as psychiatric problems, along with the quote from Dr. Chesney about how often MEDICAL problems are misdiagnosed as psychiatric problems.
The biological evidence is that CFS produces blood test results diametrically opposed to those in depression and other mental illness. Dr. Bastien's neuropsych research reveals that CFS doesn't look like depression on psych tests, either. Yet, there are still those who stubbornly insist that CFS=depression because they have a couple symptoms in common. Which is like saying that measles and poison ivy are the same disease because they both produce red spots.
I hope you have more compassion and understanding for your patients than you exhibit here, or you're going to be one of the doctors that Dr. Groopman writes about who cling to their stereotypes even when the facts prove them wrong.
There are major ethical issues with your diagnosing without all the facts.
The SSDI psych evaluators – who had all the documents – saw that one set of documents supports my story; the doctors’ notes and the judge’s written decision contradict the documents from those with first-hand knowledge. I have doctors’ sworn testimony to their ignorance of even the basics about CFS and their explanations tortured beyond credulity how they “knew” I could work.
The psychiatrists unanimously concluded that although I do have the sort of cognitive/memory dysfunctions described in Dr. Bastien’s research, I do not have any sort of emotional disturbance. None at all. No depression, no paranoia. What you call paranoia, they saw as true statements proven by other evidence. The government’s own documents show I was working full-time for 12 years after one doctor says I stopped working entirely; the psychiatrist believed me that the doctor lied because there was official proof that I was telling the truth.
What I have is solid evidence that I had incompetent doctors, backed up by the opinion of a respected doctor that their ignorance left me permanently disabled.
The judge says I have a husband. I say I’m not married. The man identified says we’re not married, not even dating – he’s a hired worker who sometimes drives me places. Who knows my marital status best? The judge says whatever it takes to support his conclusion, regardless of the actual facts. According to him, the doctor who says I’ll never work full-time again said I am perfectly healthy. The doctor’s report is the evidence of what the doctor actually said and it’s not the version in the judge’s decision.
Documents prove those with ulterior motives twist words and make up their own “facts” when the real ones don’t say what they want. This is not paranoia, it's proven fact that I've been lied about.
Skygaze writes: As med students, it is most enlightening.
As a patient, it is most enlightening to see that 20 years after MRIs showed brain lesions in CFS similar to those in MS, medical schools are still teaching CFS in psych classes instead of neurology.
It just confirms what the activists with medical training have been saying: that advances in research are not incorporated into the practice of medicine for 17 years, on average. You're still being taught outdated concepts that were proven wrong in the 1980s.
That is, if you even are a med student and not just pretending so that you can give yourself a veneer of "expertise" on the subject. If you truly are a med student, give me the name and address of your psych instructor and I will send copies of the records proving that the psychiatrists say that your casual diagnosis is wrong and the records proving that everything I say is true, that the doctors and judges are the ones who are lying.
You have skewered what I said to fit your agenda.
CFS was not the issue that was being discussed. It was how a patient with mental health issues can hinder physicians trying to treat their physical dilemmas by refusing to acknowledge any possibility of also having accompanying MH problems.
It was never inferred you did not have a physical ailment. It is just clear from reading your blog, with references on how doctors, judges - everyone - is against you, that you also have underlying problems that are not physical, but in the mental health area.
That was the context in which we examined your writings.
And btw - you are a "proof reader"? Where did I ever say I did not know the instructor's intent for introducing your blog to her classes?
Skygaze writes:
It is just clear from reading your blog, with references on how doctors, judges - everyone - is against you, that you also have underlying problems that are not physical, but in the mental health area.
You obviously choose to ignore the comments from Brian and DaveM who know first-hand that judges often discriminate against CFS/fibro patients, doctors don't know the newest/best treatment, and what actually happened with my hired cleaners.
While I had live-in "help", Brian was in the house every week and saw with his own eyes that the living room went from tidy to having boxes and bags piled all over -- things that they were too lazy to put away. His opinion on whether they screwed me over is more valid than yours.
Dave's opinion on how many CFS patients are screwed by doctors and judges is also more valid than yours because he's seen how many of his support group members had the same experience I did. You just assume that because in your limited life experience that hasn't happened to anyone you know, it doesn't happen at all.
As I said, the psych evaluators who had the medical records to see for themselves that I was telling the truth about doctors lying in medical records, and prescribing things that I had already said were useless and/or gave me massive side effects, did not believe there was any mental health problem. They could see I was telling the truth that the doctors were a big part of my problem. It wasn't paranoia ... it was there in black and white for them to see themselves.
You choose not to accept that the facts are the facts. But you also choose not to give me an address where I can send the proof that doctors and judges have written lies, which proves to me that you have no interest in learning the truth. No matter how many eyewitnesses tell you that what I say is the truth and not unreasonable paranoia.
IF physicians lied, judges lied, (let us forget about the housekeeping case - but how again was even that judge against you?) and you have absolute documentation. it makes no sense whatsoever that you did/do not persue the matter in the courts.
And what about the state bureau of monitoring doctors? Surely you can not believe that even they would ignore legitimate evidence of an MD "doctoring" a patient's medical charts. Aside from being totally unethical it is outright illegal to do so, and they would not only be interested but would also take action against them. The "brotherhood" is not so strong that physicans are allowed to do such things without penalities. And few want such practioners to be able to carry on after doing so.
This was only one aspect of your situation that we discussed made no sense if things were truely how you say. Rather, it would be how you percieve it to be.
Skygaze writes: And what about the state bureau of monitoring doctors?
It was reported to them, and I received a letter saying, essentially, since they didn't amputate the wrong limb or kill me, it was not worth the Board doing any investigation. I have since verified with other sources (both lawyers and governmental agencies) that the Medical Board does not have the funding to investigate every case of alleged malpractice and therefore, really does only do an investigation on loss of life or limb.
Other doctors have since commented on what they see in the medical records, and flat-out called it malpractice. Unfortunately, that medical group essentially ran out the clock with their empty promises; by the time I consulted the doctor who was horrified by what they did to me, it was too late to sue based on his opinion.
My lawyer has repeatedly appealed the judge's decisions pointing out that he makes no reference at all to three different VocRehab experts testifying that I cannot work, and his misstatements of fact and medical reports. If my lawyer didn't see the same lies I did, she wouldn't keep filing appeals. Re-read DaveM's comment about the problems other CFS patients have with SSDI; I'm not alone. You can also contact Bernie the Attorney at NCF who'll tell you the same thing.
Okay, let me try and have you get this.
I am not talking about malpractice.
What I am saying is that if you have 100% proof, as you claim, that a physician altered your medical chart in any shape, form or matter - by even changing your temperature at a visit - that is grounds for legal action.
It is a crimminal offense to tamper with medical records. Punishable by fines, sentencing and possible/usually loss of liscense to practice medicine.
A CRIMMINAL OFFENSE.
It is difficult to understand why, between the doctors who "side" with you, and your supposed legal background and connections, you either have not been advised or understand this.
Now do you see what I am getting at?
But, let me say in advance that I can anticipate your response to this - the DA you approached with this is friends with the doctor, or worked for him or something ..... and thus even the DA was against you.
Go ahead. Tell me I am right.
I also thought Karen was not calling the right cleaning agencies so I undertook to make the calls to arrange for a cleaner. At both the budget and expensive agencies as soon as I listd what she needed done, I was told that their girls don’t do laundry, don’t carry boxes to the basement, don’t get on chairs or ladders to clean on top of things or put things away. I called dozens of agencies and only one agreed to give us a quote, but they never showed up.
Finally I found someone but she handed Karen a brochure that listed what her agency didn’t allow her to do, which is all the things that Karen needs help with. She was allowed to dust, mop and sweep (things Karen does herself) but could not lift, carry or climb (what Karen needs help with).
A retired social worker called Social Services and using the right professional buzzwords wound up with the same response that Karen got, that if she was not elderly or on Disability there was nothing Social Services could do for her. The rules for houshold help say it’s not enough to have your doctor say you’re disabled, you have to be approved for Disability benefits. Catch 22 - the judge thinks getting no household help means she is able to do housework.
But Skygaxe claims to know better than I do how disabled my friend really is and what really happned with doctors and judges. In an ideal world it wouldn’t happen, but those of us with a few decades more life experience know that reality is very different from the idealism you learn in school. In my private life I’ve dealt with uncaring doctors and in my professional life I’ve dealt with judges who ignore the law. I was in the room when Karen couldn't even hold up her head and the judge told her VocRehab would find her a job. I know they'd never be able to place her. Just another ridiculous excuse to deny benefits to someone who is far more disabled than most of the disab
“Okay, let me try and have you get this. I am not talking about malpractice. What I am saying is that if you have 100% proof, as you claim, that a physician altered your medical chart in any shape, form or matter - by even changing your temperature at a visit - that is grounds for legal action.”
Let me see if YOU get this. In law there is something called a Statute of Limitations. If you find out that a crime was committed after that, they get away with it because you missed the deadline.
These doctors knew exactly how long they had to string her along to run out the clock and that’s what they did. They kept promising if she came back in a month or three they would give her what she wanted and the next time made the same empty promise. They didn’t tell her “I’m writing this in your medcal record” to alert her they were lying and she naively trusted tehm to do the right thing so she wasn’t checking the records. She got copies a couple years later and found out then that they lied.
The first doctor to tell her that they committed malpractice was liekwise after the statute of limitations ran out. Doesn’t matter how good her evidence is, the time ran out before she got the evidence. The DA doesn’t waste thier time on cases where the statute has run.
Her problem was that she wasn’t paranoid *enough*, and believed every lie she was told while they ran out the clock so she couldn’t sue.
Get those stars out of your naive yougn eyes, Stargazer. Sometimes bad things happen to good people and it has nothing to do with what they did to deserve it. Other than they believed what they were told by people they shoudl be able to trust.
Karen believed the doctors when they said "I want to help". That's what you want her to do. Right? The pills made her sicker but she believed them the next month when they said "try these instead" and those didn't help either. She believed them for years and they made her sicker. Every month she asked for sleeping pills and pain pills and every month they told her "I want to try one more thing first". Four years later a doctor tells her it's now too late to cure her and a lawyer tells her it's too late to sue.
Her friend had the same problem with the same doctor. The head of the support group had the same problem with the same doctors.
I know they teach you in medical school that doctors are perfect but if three people had problems with the same doctors then the problem isn't Karen, it's the doctors.
Skygaze writes: It is a crimminal offense to tamper with medical records. Punishable by fines, sentencing and possible/usually loss of liscense to practice medicine.
That's correct. It is a criminal offense. Unfortunately, the Medical Board showed no interest in investigating it.
Eventually someone at a different medical office told me to contact a different government agency, where I was told the statute of limitations had expired.
That medical office also told me that I could file a HIPAA request to correct the medical records, but the lawyer for the medical group told me I was misinformed and refused to even discuss it. Federal gov't told me she was wrong, and she still insisted she was right and I was wrong and the records would not be changed.
Obviously, if they change them, they're admitting they did something wrong. Not being in that field of law, I can't say for sure, but that admission might re-open the statute of limitations, which they wouldn't want.
At this point, the only effect it would have would be on the SSDI case, where the judge has made it clear he doesn't care what the doctors say, so it's not worth hiring a lawyer to fight for corrections.
Skygaze, if you have not yet read Dr. Groopman's book "How Doctors Think", add it to your summer reading list. It's full of people who believed their doctors and suffered for trusting them. He's a respected doctor at Deaconess, not a patient who hates doctors and suspects the worst of them.
I am not the only person whose doctors stopped returning calls. Groopman documents it at Sloan-Kettering, the pinnacle of cancer care!
"Whatever the doctor's own attitudes about the patient, it is a critical element of any mutually respectful therapeutic partnership that the doctor acknowledges the patient's version of the truth of his or her story." I didn't get that. My doctors (like you) repeatedly thought they knew my life history better than I do and put their version of the truth in the records, just like you prefer the facts according to you instead of the facts according to the people who were actually there to witness the events.
15% of diagnoses are in error and "miscommunication is not uncommon between patient and doctor". That's reality. That's not paranoia on my part or victim mentality by CFS patients. That's what DOCTOR Groopman found with his research. Doctors don't listen. Patient care would improve if they did. You show that you don't listen, either, you already know everything. You know more than eyewitnesses.
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