Saturday, July 5, 2008

NANCY KAISER -- Patient 00

KAISER -- Nancy M. Kaiser, age 72 and long time resident of Albuquerque, passed away on June 15, 2008. She is survived by her husband, James A. Kaiser; three children, Laurie Crnkovich and her husband Greg of Rio Rancho, NM, James M. Kaiser and Deanna Ochoa of Simi Valley CA, David Kaiser and his wife, Peggy, Bear, DE; and two grandsons Steven Crnkovich and Michael Kaiser. Nancy grew up in Olean, NY. Nancy was a dedicated homemaker, donated time to Altamont Little League, golf enthusiast, and long time volunteer at St. Joseph's Hospital. Throughout her long battle with Chronic Fatigue Immune System Dysfunction, she was always doing battle on the front lines of this disease. She was a long time member and essential volunteer to the NCF and passionate about helping others with the disease. Her long journey showed up as an article appearing in Newsweek and Readers Digest as patient "00". She was the first one to be on an experimental drug to help fight the disease. She was interviewed on MSNBC and spoke at many large conferences to inform and educate doctors about CFIDS. She was an advocate for the disease in every way possible even in her last days. The friendships formed along the way were a force that kept her rejuvenated and blessed her life. At her request, Nancy was cremated and no public service is scheduled. No flowers please, contributions can be made in her name to the National CFIDS Foundation 103 Aletha Rd. Needham, MA 02492-3931. Funeral services are entrusted to: Daniels Family Funeral Services 1100 Coal Ave. SE Albuquerque, NM 87106 505-842-8800 www.danielsfuneral.com Left-red    Print Obit   Email-red   Published on: Sun June 22, 2008

Monday, June 30, 2008

Dr. Katrina Berne on why CFS is not psychiatric

Dr. Katrina Berne is a licensed clinical psychologist.  She has had CFS since 1985 with secondary FMS, and specializes in treating patients with CFS/FMS.  Obviously, as a patient and a psychologist, she knows whereof she speaks, and how to differentiate physical illness from psychiatric conditions.

"The medical profession often views depression or inability to cope productively with stress as the cause of any symptom for which a physiological cause is not evident. Psychiatry becomes a convenient dumping ground for those with unexplained illness. However, indiscriminate attribution of symptoms to psychological factors is inappropriate.

"... The notion that we cannot handle life, fabricate symptoms, or develop illnesses in order to receive special attention is ludicrous. Attribution of illness to such conscious or unconscious motivation is inaccurate, unfair and insulting. Phrases such as ‘can’t manage stress’ and ‘mind over matter’ add insult to illness. ... Some CFS/FMS patients experience little or no depression.

"Numerous chronic disorders share common features, including symptoms and abnormalities. The similarities are remarkable ... Skeptics who dismiss CFS, FMS ... imply that poorly understood conditions do not deserve the respect afforded ‘testable’ illnesses. This practice lifts a burden from disinterested physicians and blames – even traumatizes – sufferers.

"Double standards allow medical doctors to diagnose psychiatric illness ... in the absence of a known physiological cause, but do not typically allow the psychiatrist or psychologist who rules out emotional causes to rule in physiologic illness. That is, acceptable practice allows a physician to say ‘It is all in your head’ but how often does a psychiatrist or psychologist say ‘Nothing is wrong with your head, the illness is in your body’? ... Illnesses such as MS, rheumatoid arthritis, polio, HIV/AIDS, stomach ulcers and diabetes were once considered to be of psychiatric origin. When markers or diagnostic tests were developed, the diagnoses shifted to ‘real’ illnesses, those of the body. History repeats itself.

"...The history of psychiatric disorders in the CFS/FMS population is similar to that in the general population. ... Depression does not cause these syndromes and is not present in all cases; however, many patients are given a psychiatric diagnosis when a physiological diagnosis is not apparent. Overlapping symptoms ...and simple ignorance causes confusion between CFS/FMS and depression.

"The rate of depression is not necessarily higher in patients with the most severe symptoms. ... Nonantidepressant medications common in CFS/FMS treatment are not effective in treating [depression].

"Psychological tests are frequently used to ‘rule in’ depression and other psychiatric disorders; however, they cannot distinguish between a test-taker’s medical and psychological disorders. One who endorses numerous physical complaints is likely to be labeled depressed. ‘Results in ill populations may be falsely elevated for psychological disorders’ (Jason, Richman, et al. 1997).

"...When ‘neurological’ items were removed from the test and the tests were rescored, all scores dropped to within the normal range, that is, no elevations remained. This finding provides evidence that neurological dysfunction rather than psychopathology accounts for the typical CFS profile.

"CFS and FMS share common factors with somatoform disorders – multiple symptoms, lack of consistent lab findings ... but are excluded from this category by symptom prevalence, age, suddenness of onset, lack of prevalent personality disorders, and exercise and alcohol intolerance.

"The term functional somatic syndromes refers to suffering in the absence of specific medical findings. This term is often inappropriately applied to poorly understood illnesses such as CFS, FMS ... FSS disorders are framed with circular reasoning: ‘You think you have a serious illness but you don’t because we have no specific test for it.’ The alleged secondary gains of illness are typically absent, yet patients are accused ...

"... a diagnosis of FSS more often provides a convenient way to dismiss patients’ symptomatic complaints whose cause is unknown. The absence of diagnostic tests for many known disorders creates fertile ground for physicians who view any difficult-to-diagnose disorder as imagined illness. However an illness that defies current scientific knowledge is still an illness.

"... Although multiple symptoms are seen in somatization disorder, symptom clusters typical of CFS and FMS are not found in this group, nor is sudden onset, which often characterizes CFS/FMS.

"... Many diseases are labeled psychiatric or 'stress' disorders until causal agents or illness markers are identified, at which time they graduate to the status of legitimized, genuine illness."

* * *

One of the things that was used in the early days of CFS to prove that patients were not merely hypochondriacs was the ability of patients who did not know any other patients to recite the exact same symptoms as the others.

One doctor accused me of being a hypochondriac because I showed up in his office in response to my husband reading a magazine article that described the symptoms I'd been having -- now that we recognized it as a serious condition that wouldn't go away on its own, we wanted medical help, but the doctor chose to believe the symptoms showed up only after I'd read the article (I wasn't well enough to read the article myself, so how could that be?). 

The next doctor observed that I could not be a hypochondriac, because I was describing accurately symptoms that were NOT in the article, or in any other published article for the general public.  The only way I could know what the next dozen symptoms on the list were (not just the half dozen in the article) was if, in fact, I had those symptoms.  He had no difficulty giving me the correct diagnosis.  I wasn't just picking symptoms at random, I was describing the same symptoms as every other patient; the odds of doing that by chance are astronomical.

Psych consultants have repeatedly stated that they find nothing to support a depression diagnosis.  They know the difference between medical illness and depression, and I'm not saying the right things to convince them I'm depressed; I'm describing only those symptoms of depression that overlap with symptoms of the flu, and then I'm describing other symptoms that are definitely physical, because they're not seen in depression.  Yet, the unanimous vote of the psychs that I'm physically ill has not prevented me from having a series of MDs contradict them by giving a psychiatric diagnosis that the psych experts themselves refuse to support.

As each piece of the puzzle falls into place, I get abnormal blood tests, etc., it's that much more damning evidence that those who think the problem is purely psychiatric are wrong.  When I had the same symptoms that are now being blamed on mydivorce DURING the marriage, they were blamed on being married and I was told they'd go away if I got a divorce.  That doctor refused to listen that the symptoms started BEFORE the marriage.  (We've heard the same story from other women: those who are single are told they don't like being single and the problems will go away if they get married, and those who are married are told the cure is a divorce, and some are married/divorced/married/divorced and have the symptoms no matter what their marital status.)

My chiropractor gave me a "diagnostic profile test", and rather than just relying on the computer's numbers, he reviewed the actual answers.  While the computer flagged me as depressed, he noted that everything I'd marked in that section was also cross-referenced in a physiological section of the profile; none of my answers in the depression category were to questions that would only point to depression -- the same questions were in the categories for chronic pain and other physical problems.  Just like Dr. Berne's rescoring of the tests after removing the "neurological" questions proved the problem was neurological rather than psychiatric.

There's already more than adequate evidence that CFS is a physical illness, not a psychiatric one.  Eventually, that evidence will become common knowledge, and those who have made erroneous psychiatric diagnoses and refused to accept the reality will be ostracized as uninformed and behind the times.

As Dr. Yunus has said "it's not the patients who are disturbed ... it's the doctors."  They can't open their minds enough to accept the reality that CFS is, as patients have described, post-viral, and that the symptoms, while seeming disjointed to a PCP, made perfect sense to a neurologist, who instantly recognized the pattern.

FIRST REPORTS FROM “VIRUSES IN CFS” CONFERENCE

Yet more nails in the coffin of the psychiatric lobby. Perhaps with more publicity like this, we can finally get the necessary differentiation between post-viral CFS and all those psych conditions they like to lump in with us so they don’t have to admit that CFS is a physical illness with a purely physical cause, and not "stress", "emotional trauma", or the ever-present "delicate hothouse flowers unable to cope with real life". (No "delicate hothouse flower" could possibly put up with the BS that CFS patients deal with on a daily basis, from verbal abuse to false accusations to the constant pain.)

 

http://www.hhv-6foundation.org/

HHV-6 FOUNDATION NEWS

Conference Report

The 6th International Conference on HHV-6 & 7 and satellite conference on Viruses in CFS held in Baltimore June 19- 23rd were very successful, with over 230 scientists and clinicians in attendance. We were also pleased to welcome representatives from five drug companies and half-dozen diagnostic companies who are exploring therapeutic options and new diagnostic assays.

Among the highlights:

International Conference on HHV-6 & 7:

Kazuhiro Kondo, MD, PhD, of the Jikei University Medical School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein present in Chronic Fatigue Syndrome (CFS) patients but not healthy controls that may contribute to psychological symptoms often associated with that and other disorders. http://www.hhv-6foundation.org/PRKondo_PFS.pdf

Italian researchers, professors Arnoldo Caruso of the University of Brescia and Dario Di Luca of the University of Ferrara presented data suggesting that human HHV-6 infects and persists in a dormant state in endothelial cells, the cells lining blood vessels, and that the latency protein U94 causes these cells to lose their ability to grow, to form new blood vessels, and to take part in healing processes. This finding has potential consequences for both cardiac disease and tumor control. http://www.hhv-6foundation.org/U94DiLuca.pdf

Danish scientists Professor Per Hollsberg, MD and his PhD student Vanda Lauridsen Turcanova from the University of Aarhus In Denmark demonstrated that HHV-6 activates endogenous retrovirus HERV-K18 with possible consequences for autoimmunity. Viral infections are known to worsen autoimmune conditions. http://www.hhv-6foundation.org/PRK18retrovirus.pdf

Dr. Jose Montoya, an infectious disease specialist at Stanford University, released preliminary findings on his double-blind placebo-controlled antiviral trial of Valcyte for a subset of patients displaying high antibody levels to human HHV-6 and Epstein-Barr virus (EBV). Statistically significant cognitive improvement was noted in the Multidemensional Fatigue Inventory (MFI-20) Mental Fatigue subscale and on patient self-reported of cognitive functioning, but there was not a significant result on the overall MFI-20 index. Data from treadmill testing, cytokine analysis, gene expression and other viral markers is still pending and will be announced at a later date.

Symposium on Viruses in CFS & Post-viral Fatigue:

Brigitte Huber, PhD, of the Tufts University School of Medicine presented evidence at a medical conference that suggested a reactivated ancient retrovirus embedded in the human genome may be active in chronic fatigue syndrome (CFS) and multiple sclerosis (MS) patients. Dr. Huber found that both MS and CFS patients (whose illness had been triggered by infectious mononucleosis) were at a higher relative risk for containing a HERV-K18 variant known to be particularly potent at inducing superantigen activity. Superantigens are proteins that are able to induce a strong undifferentiated T-cell response believed to impair the regulation of the immune system over time.

(~jvr: because the hyperlink on this site doesn't work, I repost this text below for the sake of completeness)

Birgitta Evengard, MD from the Karolinska Institute reported that 33 twin pairs discordant for CFS, the twins had higher median EBV Early Antigen antibody levels than matched controls. VCA and EBNA antibodies did not differ between the two groups. The median HHV-6 Antibody levels did not differ between patients and controls. The data on both is preliminary since only two dilutions were done. No data was supplied on whether there was a subset of patients with significantly elevated antibody levels to HHV-6.

OTHER NEWS IN HHV-6:

* HHV-6A was associated with rhomboencephalitis in immunocompetent children, characterized by new onset seizures, ataxia and opsoclonus-myoclonus. (Crawford 2007)

* HHV-6 was found in79% of lymph nodes from Hodgkin's Lymphoma patients (Lacroix, 2007) compared to EBV in 62%.

* HHV-6B was associated with post-transplant acute limbic encephalitis, characterized by anterograde amnesia, syndrome of inappropriate antidiuretic hormone secretion and temporal lobe abnormalities. (Seeley 2007)

* HHV-6 antibody titers were elevated in army recruits six to 12 months previous to diagnosis with schizophrenia (Niebuhr, 2007)

* HHV-6 was frequently found in the gastroduodenal mucosa of transplant and immunocompetent patients with gastroenteritis; 94% of transplant recipients with biliary complications had HHV-6 or CMV in the duodenal mucosa. (Halme 2008)

* Two thirds of resections from patients with refractory mesial temporal lobe epilepsy (MTLE) were found to have very high levels HHV-6B infection (Fotheringham, 2007); chronic viral infection may alter glutamate transport to cause seizures. (Fotheringham b, 2007) `

````````````````

*Retrovirus & ME/CFS, MS and Autoimmunity*; Help ME Circle, 24 June 2008

http://www.marketwire.com/mw/release.do?id=871774

SOURCE: HHV-6 Foundation

Jun 23, 2008 10:00 ET

Ancient Retrovirus May Contribute to Chronic Fatigue Syndrome, Multiple Sclerosis and Autoimmunity

Smoldering Infections of Two Common Viruses EBV and HHV-6 Cause Inherited Retrovirus Genes to Activate

BALTIMORE, MD--(Marketwire - June 23, 2008) -

Brigitte Huber, PhD, of the Tufts University School of Medicine, presented evidence at a medical conference that suggested that a reactivated ancient retrovirus embedded in the human genome may be active in chronic fatigue syndrome (CFS) and multiple sclerosis (MS) patients. Danish scientists at the same conference suggested that the activation of this retrovirus, dormant in healthy individuals, could be the reason why autoimmune conditions worsen with viral infections.

Chronic Fatigue Syndrome and Multiple Sclerosis Patients at Increased Risk From the Effects of HERV-K18 Activation

"Patients with profoundly fatiguing diseases such as MS and CFS may be particularly susceptible to HERV-K18 activation," said Dr. Huber. The announcement was made at the International Symposium on Viruses in CFS and Post-Viral Fatigue, a satellite conference of the 6th International Conference on HHV-6 & 7. Using an SNP-based genotyping method, Dr. Huber found that both MS and CFS patients (whose illness had been triggered by infectious mononucleosis) were at a higher relative risk for containing HERV-K18 variants known to induce superantigen activity. Superantigens are proteins that are able to induce a strong undifferentiated T-cell response believed to deplete the immune system over time.

Viral activity and/or immune activation has been shown to trigger HERV-K18 activity. Both Epstein-Barr virus infection (infectious mononucleosis) and interferon-alpha administration are associated with HERV-K18 activity. "HHV-6 activates HERV-K18 as well," said Danish investigator Per Hollsberg, MD and professor from the University of Aarhus In Denmark. His PhD student Vanda Lauridsen Turcanova presented this data at the same conference. "Furthermore, this retrovirus activation may have important consequences for autoimmunity," he added.

HERV-K18 activation may be the endpoint of an HHV6/EBV interferon pathway operating in both MS and CFS. HHV-6 is being investigated as a co-factor in both diseases. Other retroviruses, HERV-H and HERV-W, have been implicated in MS by other researchers. Over 75% of MS patients meet the criteria for CFS. Fatigue is often the most disabling symptom for MS patients. The two diseases also share characteristics such as grey matter atrophy, impaired cerebral glucose metabolism, autonomic nervous system activity and altered patterns of brain activity.

Dr. Huber's study suggests that endogenous retroviral activation in CFS and MS could produce some of the symptoms associated with both diseases. She has received a National Institutes of Health (NIH) grant to study these issues. Per Hollsberg has done extensive research on the role of EBV and HHV-6 in multiple sclerosis.

 

 

The HHV-6 Foundation

The HHV-6 Foundation encourages scientific exchanges and provides grants to researchers seeking to increase our understanding of HHV-6 infection in a wide array of central nervous system disorders. Daram Ablashi, the co-discoverer of the HHV-6 virus, is the Foundation's Scientific Director.

Contact: Kristin Loomis Executive Director HHV-6 Foundation Santa Barbara, CA 805-969-1174

http://www.hhv-6foundation.org/  

- - - -

Tom's first impressions of the HHV-6 Foundation's Satellite Conference are now posted on the RESCIND site. Since most newsletters will probably be geared toward the research itself, we decided to do a "fly on the wall perspective" of the conference. We'll have more musings on the conference as we are able. And as always, if you haven't signed the petition, please do so!

Tom & Jerry

http://www.rescindinc.org/  

Does ANYONE clean any more?

Doesn’t anyone in this town clean?

A friend stopped by this morning and noticed a pile of stuff on my couch. I explained it away as a cleaning lady who saw me momentarily toss something there so that I could use two hands for something else, and my setting something there for a minute was interpreted as permission to use the couch for permanent storage. He nodded; once one of his cleaning ladies saw him put something on the kitchen table that wasn’t dinner, she also decided it was easier to pile things on the table than to put them where they belong.  In other words "you won't mind me putting things there, because you put stuff there yourself."

He confirmed having the same problems with his cleaners: just like mine, when you tell them "put this in the closet", they act like they don’t understand English, and look for somewhere else to put it so that you’ll put it away yourself. But when you refuse to pay them for not doing what they were hired to do, suddenly they speak fluent English, including the phrase "pay up or I’ll sue you for fraud". (Though they don’t do so well with the legal term "quantum meruit", i.e., paying what the job is actually worth.)

His also have only wanted to dust and mop, and not do any serious cleaning. He also had one who considered it "cleaning" to move things from Point A to Point B this week, and from Point B to Point A next week, without ever wiping them down in the process.

After reassuring me that I’m not the only person in town who can’t find a good cleaner, verifying the same experience I’ve had (most don’t clean and those few who do clean are flaky and can’t remember to show up unless you call to remind them "tomorrow’s Tuesday, and you need to come clean my house"), we concluded that there is not a single cleaning lady in this town who is both a good cleaner and a reliable employee who’ll show up every week without fail.

So, I’ll put the call out here – if there is anyone in the Sacramento area who is willing to do more than just dust, who really cleans, who does 3 hours work for 3 hours pay, and can guarantee that she’ll show up every time, I know a lot of people in town who are looking for a good, reliable cleaner. Impress me, and I will give them your phone number. Between us, we can probably network you into working 5 days a week. I can’t speak for them, but I have no problem with paying a lot more than minimum wage for a job that’s done right. But you’re not going to convince me that I owe you 4 hours pay for a job that I know from experience can be completed in under 1 hour; if it took you 4 hours to do only that one task, that tells me that as soon as I stopped watching, you stopped working.

Although years of being forced to use hired cleaners instead of being able to do it myself might lead you to believe otherwise, I like my house CLEAN. Don’t assume that because it’s a mess when you come in the first time you’re here to clean that it’s OK to leave it a mess ... a lot of that mess was created by cleaners who put things on the nearest flat surface instead of back in the cupboard. You were hired to clean, not just to dust the clutter and spray a little Pine-Sol thinking the scent will fool me into thinking the house was properly cleaned. I can see for myself that you just boxed things up instead of putting them away, and the first time I open the fridge and find something with fur still sitting on the shelf, I’ll know you didn’t actually clean the fridge in the manner in which you were instructed to do the job.

My kitchen is logically organized, all the canned goods here, all the pots there, all the towels in this drawer – there is absolutely no excuse to say "I put it all in a box for you to put away yourself because I couldn’t figure out where to put it." Similarly, my dresser is logically organized, but I’ve had people tell me that they can’t figure out that the underwear goes with the underwear, the socks go with the other socks, the T-shirts go in the drawer with the million other T-shirts. (Not "I can’t make the million-and-one-th T-shirt fit in there because there’s no more room", but that she can’t deduce from what’s already in the drawers which half-empty drawer the socks go in ... so she just piled the laundry on the dining room table, messing up what had been a clean dining room, for me to put away later.) Either these people have a sub-moron IQ that they can’t figure out underwear goes in the drawer with the other underwear or they’re too lazy to work, and the easiest way to avoid working is to pretend you’re too stupid to do anything without being led by the hand through the steps, i.e., make the employer do the job herself under the guise of teaching you.  (The prizewinner in that category is the one who had to be taught every 3 days how to load the dishwasher.  And 3 days later had to be shown again.  And 3 days later had to be shown again.  Because if you put the dishes in sideways, you can call the bottom rack "full" after just 6 plates.  If you put them in ||||||, after 6 dinner plates there's still room for 6 soup bowls, 6 sandwich plates, and 2 pots, requiring you to bend down 14 more times.)

I have a disabled friend in another part of the state who, thank God, has been deemed "officially disabled" by the government, and thus gets her cleaners at no cost to her. Apparently, they are paid quite a bit less than I pay my cleaners (I’ve been paying $15-20/hour, and I think the government pays $9/hour ... I’m sure someone will correct meif I’m wrong), but because she is in a wheelchair (which I am not), they understand that she is disabled and that they cannot leave the chores for her to do, because she can’t do them. And because if they don’t do the laundry, put away the groceries, etc., she will call the government agency who sent them, complain that someone has to come and do these tasks, and they’ll get in trouble with someone far more powerful than a single disabled lady. One private agency told me that if I was not happy with what the cleaner did, I would have to take it up with her directly, but then refused to give me her phone number so that I could. Needless to say, when she was told by the boss that I wanted the work done that I had paid for, she wasn’t going to call me and get chewed out, so I paid $80 and got absolutely nothing for it.

Unfortunately, to get into the same government program that sends cleaners to my friend, I either have to convince the judge that it is possible to be legally disabled without being in a wheelchair, or turn 65. And since I’ve been fighting for nearly a decade with this judge’s perception that if I can get to his courtroom for one hour once every other year, I can get a job 8 hours every day, I’m thinking I’ll qualify by turning 65 before I’m deemed "officially disabled".

Sleep Disturbance and Fibromyalgia

Sleep disturbances in fibromyalgia syndrome: Relationship to pain and depression.

Arthritis Rheum. 2008 Jun 24;59(7):961_967. [Epub ahead of print]

Bigatti SM, Hernandez AM, Cronan TA, Rand KL.

Indiana University~Purdue University Indianapolis, Indiana.

PMID: 18576297

 

OBJECTIVE: This study is an examination of sleep, pain, depression, and physical functioning at baseline and 1_year followup among patients with fibromyalgia syndrome (FMS). Although it is clear that these symptoms are prevalent among FMS patients and that they are related, the direction of the relationship is unclear. We sought to identify and report sleep problems in this population and to examine their relationship to pain, depression, and physical functioning.

METHODS: Patients diagnosed with fibromyalgia were recruited from a Southern California health maintenance organization and evaluated according to American College of Rheumatology criteria in the research laboratory. Six hundred patients completed the baseline assessment and 492 completed the 1_year assessment. Measures included the Center for Epidemiologic Studies Depression Scale, the McGill Pain Questionnaire, the Pittsburgh Sleep Quality Index, and the Fibromyalgia Impact Questionnaire.

RESULTS: The majority of the sample (96% at baseline and 94.7% at 1 year) scored within the range of problem sleepers. Path analyses examined the impact of baseline values on 1_year values for each of the 4 variables. No variable of interest predicted sleep, sleep predicted pain (beta = 0.13), pain predicted physical functioning (beta = _0.13), and physical functioning predicted depression (beta = _0.10).

CONCLUSION: These findings highlight the high prevalence of sleep problems in this population and suggest that they play a critical role in exacerbating FMS symptoms. Furthermore, they support limited existing findings that sleep predicts subsequent pain in this population, but also extend the literature, suggesting that sleep may be related to depression through pain and physical functioning.

* * *

I had constant pain until I got my Sleep Number bed. By the end of the first week, I considered my fibromyalgia cured -- it no longer hurt just to exist. The fibro test points do still hurt when someone presses on them, so technically I still have fibro, but being able to sleep more than 2 hours before waking up in pain has had a big effect on my ability to function the next day. (And the time available to function, because I'm not spending a huge chunk of the day in a hot bath trying to ease the pain enough to be able to concentrate.)

Just like with CFS, fixing the quality of sleep is the first step in fixing fibromyalgia. A lot can be achieved by getting enough sleep to let the body start healing itself.

Sunday, June 29, 2008

Dr. John responds to Suzi Walker and Dr. Hilary

Letter here   http://www.mefreeforall.org/2008-Apr-Jun.448.0.html#c3698

in response to a "Celeb" M.E. sufferer, Suzi Walker, in which resident Dr
Hilary Jones says that M.E. "usually disappears within a few years on its
own"

(link  http://www.mefreeforall.org/M-E-in-the-News.107.0.html   to the
"Fabulous" Mag supplement of The News of the World, 29 June 2008 below my
signature)

(Someone might like to make the point that Suzi has been ill for 9 years).

I'm sure there are plenty of you out there who are living proof to the
contrary.

If you would like to tell Dr Hilary Jones so, the News of the World letters
e-mail address is  your.letters@notw.co.uk

Only short letters stand a chance.

Cheers
John
drjohngreensmith@mefreeforall.org


*Your Letters - News of the World*.

As far as I know, there are no statistics exclusively for people with M.E. (*Myalgic Encephalomyelitis*), which have not been distorted by adding in other patients, with a variety of illnesses, in which chronic fatigue is said to be a symptom and calling them all ME/CFS.  It may be this proportion of CFS patients who "usually improve with time" (*'I was so exhausted I couldn't move' , Suzi Walker, On the couch with Dr Hilary, Fabulous Mag, News of the World, 29 June 2008*), leaving the erroneous impression that M.E. "usually disappears within a few years on its own."

We won't know for sure until a thorough epidemiological study has been done
but, already, we can count hundreds of thousands of heads, who have remained
ill for decades, which proves Dr Hilary Jones's assertion very unlikely
indeed.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

http://www.fabulousmag.co.uk/health/index.php

'I was so exhausted I couldn't move' (On the couch with Dr Hilary Jones:
Suzi Walker, Fabulous Mag, News of the World, 29 June 2008)


Every week a celeb asks our fabulous doctor for a diagnosis. This week it's
TV presenter Suzi Walker, 36

Some days I wake up feeling exhausted.

My head feels cloudy, my joints hurt and the smallest decision has me in
tears.

I feel so weak I can't even climb the stairs.

I have Myalgic Encephalopathy (ME), or Chronic Fatigue Syndrome.

For years I didn't know what was wrong with me, and at one point I felt so
awful, I thought it was cancer.

My symptoms began nine years ago, after my daughter Sophie was born.

I contracted post natal pre-eclampsia, and within hours of her birth, I had
a fit and went into a coma.

When I woke two days later I felt weak, and I continued to feel lethargic
and achy.

Four years later my GP finally diagnosed ME but said there was no cure,
which was devastating.

Over the years I've spent thousands of pounds looking for my own 'cure', from vitamin injections to faith healers, but nothing has worked.

Stress is a trigger so I try not to get too anxious.

I also try to eat well, but it can be hard if I'm feeling dreadful.

I once got so thin that I was hospitalised and had to be tube fed.

Overdoing it at the gym can cause a bad attack of fatigue.

Is there anything I can do to keep symptoms at bay?

Suzi is raising awareness for the charities Action for ME (Afme.org.uk) and
ME Research UK (Meresearch.org.uk).


DR HILARY'S DIAGNOSIS

In its mildest form, ME causes physical weakness, extreme tiredness,
emotional and psychological distress, sleep disturbance and depression.

At its worst, it is totally disabling, making people bed-bound and dependent
on others.

Although there is no 'cure', it usually improves with time and there are
things you can do that can help.

First, graded exercises with realistic goals and plenty of rest in-between
builds stamina.

Then cut out caffeine and alcohol and take extra magnesium and omega-3 fatty
acid supplements.

An anti-inflammatory tablet like ibuprofen can ease joint and muscle pains
and headaches, while talking therapy and antidepressants can lift mood.

The good news is that ME usually disappears within a few years on its own.

But in the meantime, joining a local support group and learning how to
handle stress effectively can make a world of difference.


(c) 2008 News Group Newspapers Ltd.

* * *

There are ways to improve post-viral CFS (which is not the same as psychiatric fatigue), but those ways do NOT include exercise.  Suzi is right, a trip to the gym will make you feel worse ... if you have CFS rather than depression -- depressives feel energized after exercising.  Dr. Hilary is wrong in saying that graded exercise is helpful.  Obviously, we don't recommend that anyone lie in bed doing nothing if they are capable of doing a few things for themselves, but Dr. Cheney has always been quite clear that aerobic exercise is dangerous for CFS patients -- do some stretches/yoga/resistance exercises to prevent your muscles turning to jelly, but nothing strenuous.  I can "mosey", but I can't walk at a normal speed.  If I allow 30 minutes to walk the 6 blocks to the grocery, I return home tired and needing to sit down, but if I try to walk the 6 blocks in 10 minutes, I return home exhausted and needing to go to bed the rest of the day.

There are many ways to differentiate depression and CFS -- Dr. Bell's book lists some of them, Dr. Berne's book has a two-page chart -- but the easiest is to gauge the patient's physical reaction to aerobic exercise.  A hallmark symptom of CFS is exercise intolerance, also called post-exertional malaise.  Unlike all those blood tests that will come up normal, this test costs nothing, and will give you a foolproof answer.

Some patients with CFS develop depression as a reaction to having their former lifestyle ripped away from them, just as some cancer patients and MS patients and amputees develop depression as a result of the lifestyle changes imposed on them.  Anti-depressants and counseling can help the depression, but they won't cure the CFS any more than they will cure cancer, MS or grow a new limb for an amputee.  Again, if the patient has tried several anti-depressants and still isn't feeling better, that's a pretty good sign that the problem isn't depression, it's CFS.

Talking to a friend who is a retired psychiatric nurse makes me feel better (in the sense of feeling less isolated, spending 99% of my time at home, and most of that in bed or on the couch), but it does not miraculously make me feel well enough to go back to work.  In fact, having to concentrate on a phone conversation exhausts me enough to require a nap after I'm done talking to her.  She (like several other psych professionals I communicate with on a regular basis) has never told me "I think you need counseling, you sound depressed".  It's only the amateurs who try to tag the depression label on anyone who says they're tired and spend most of the day in bed.  The professionals know there's more to it than that -- someone who's depressed doesn't WANT to do anything, whereas someone with CFS wants to do it very much, but finds their body doesn't cooperate.

My first specialist told me the key is to improve the quality of sleep.  And, sure enough, after years of being handed one anti-depressant after another that didn't do a thing, when I finally got sleeping pills that put me to sleep 8 hours a night (instead of 2 hours), I startd to improve.  My immune system restarted and was able to start attacking the virus again.  I ran a 101 fever for 6 months (duration documented by the doctor's office), which is additional evidence that I have post-viral CFS, not a psychological problem.

Ibuprofen is an anti-inflammatory.  If you have inflammatory pain (e.g., arthritis), it will help.  But if you have the neurological pain from CFS/fibro, you can take Advil by the handful, and all it'll do is give you an ulcer ... it won't relieve your pain.  If you can get your doctor to prescribe something narcotic (I'm taking Tramadol), terrific.  If not, heat is your friend: hot bath, hot weather, heating pad.  Also, try FibroSoak/FibroRub from www.MtShastaNaturals.com

This response by Dr. Hilary shows the immense level of ignorance that CFS patients have to deal with -- doctors who blissfully prescribe precisely the things that make CFS worse, because they can't tell the difference between the symptom of chronic fatigue, psychiatric Fatigue Syndrome, and post-infectious Chronic Fatigue Syndrome (known in other English-speaking countries as Myalgic Encephalomyelitis). 

Too many of us go to doctors expecting to be cured, and instead wind up getting steadily worse while they play Blame The Patient.  Instead, the blame needs to be laid where it belongs: at the feet of doctors who think they know more than they do.

In the legal profession, we're trained to say "I don't know, but I can find out".  There's no shame in looking things up -- to the contrary, we can charge $100/hour for making sure that we're giving you the right answer.  Doctors, on the other hand, hate to say "I don't know".  They'd rather doom a patient to a lifetime of disability than admit there's something they need to look up.  I'm far more impressed by a doctor who does what it takes to make sure that I get the RIGHT diagnosis and the RIGHT treatment than one who goes for the easy answer, and then blames me when the wrong treatment, for the wrong disease, doesn't cure me.