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From Our Readers – Comments & Suggestions – 09-29-10

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Dr. Ellie Stein Clarifies ‘Why ME/CFS is not a Psychiatric Disorder’

Did you miss hearing the presentation on September 15 in Toronto by Dr. Ellie Stein, MD, on ‘Why ME/CFS is not a Psychiatric Disorder? If so, you can view a pdf of the slides she used (http://www.meao-cfs.on.ca/events-past.html)  at the ME Association of Ontario website.

Dr. Stein directed her presentation to an audience of therapists, healthcare providers, and patients. The presentation/slides cover:

• The evidence that ME/CFS differs from known psychiatric conditions

• How to differentiate depression/anxiety from ME/CFS

• How to manage psychological symptoms in the face of ME/CFS (including the cognitive behavioral therapy debate)

• How to manage the neuro-cognitive symptoms of ME/CFS (like ‘brain fog’)

• Maintaining hope while waiting for better medical understanding. – T


XMRV Conference Abstracts/Slides are Online

The abstracts from the 1st International Workshop on XMRV and videos of many of the presentations are published online at the Virology Education website (www.virology-education.com/index.cfm/t/Workshop_material/vid/1A5D65BD-FB8B-8AE1-5E10829372D080B4). There are two sets of videos, one for September 7 and one for September 8 (the day that covered CFS). – C


Dr. Myhill Told (Falsely?) She Has No Right to Call Witnesses in Oct 7 Hearing

Sanctioned by the General Medical Council in April apparently for expressing such beliefs as that vitamin B-12 or magnesium may help some ME/CFS patients (a 'given' among leading clinicians in the US, for example), Dr. Sarah Myhill, MD, has been summoned to appear for a further hearing on Thursday, October 7.

For the occasion, she has asked advocates, and patients who feel they may have been harmed as a result of the GMC sanctions (she was forbidden to prescribe medications to her patients for 1 year), to "tell your story, and my story" to the Press, and write or email letters to the GMC, kindly with a copy emailed to Hania at Dr. Myhill's practice as part of her defense database (hania@doctormyhill.co.uk).

Dr. Myhill asks those who have written to insist on relevant and acceptable answers from the GMC to the points they have raised. For details, and to review an informative letter written by patient/advocate Craig Robinson, click HERE and scroll down. – E

Breaking News: As of Sep 29 (US time), Dr. Myhill's staff issued a news release titled "So the GMC do not know their own rules; what hope is there?" Have the GMC misled her purposely to maintain control of a very dubious situation? Do they really not know the law that should be guiding their proceedings? Or?


Registry of Recovered ME/CFS Patients Could Help Research

Re:"Looking to Interview Recovered ME/CFS patients” http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1401891 on the ME/CFS & FM Message Board

Some people are able to recover from CFS. A recovery registry should be created. This could be used to study people who were able to recover from CFS. – L

I am very dubious about reported recoveries. Glad that people feel and function better, but until we sort out what this illness entails it’s all only personally validating. The case definition and diagnosis is a mess. I know of people who have had a post viral fatigue been diagnosed with CFS, people with a diagnosis of fibromyalgia who fit the criteria for CFS, some people who had co-morbid depression diagnosed with CFS. People with Q-fever and Ross River fever diagnosed as having CFS. How do we know what any of these people have? Here in New Zealand our Department of Health records some people as having being diagnosed with ME and others who have been diagnosed with CFS.

So if we don't know what people actually have, how can we say what produces recovery? Every idea I have heard or tried for symptom relief. I have never heard of anything that would logically lead to a cure. Descriptions of the illness vary so much. I am not saying people cannot recover from ME/CFS but there is nothing in anything I have read to tell me they can/do, because I don't know if they had CFS in the first place.

I have had this for over 15 years. First thing I had to do was adapt to the illness and change my life around. This required considerable cognitive change. I gave up my profession, I gave up playing music, I modified my relationships I set small goals. I became more assertive with my medical advisors. I changed my diet, took painkillers, took supplements, avoided neurotoxic chemicals or wore a mask. Over the past 5 years I have systematically increased my fitness. I do function better than I did 15-10 years ago, and sometimes I think I am normal. I know if I went back into my profession, etc. I would fail miserably. So I have adapted downwards and feel normal within a new framework. Have I recovered? – I


Antibiotics, Immune Disruption, and the Appendix

Re: the article “Repeated Antibiotic Use Disrupts Gut’s Immune Defense Teams”

I wonder if there is any correlation between people who had their appendix removed and their inability to rebound after taking antibiotics. One theory is that the appendix contains the emergency backup supply of probiotics needed to reseed the intestines after an intestinal problem that wipes out the good bacteria. No appendix, then no probiotic supply, and perhaps more side effects from antibiotics? – S

Note: Could be. See for example “Duke University investigators report ‘Appendix isn’t useless at all: It’s a safe house for bacteria’ – beneficial bacteria to protect the gut, that is.”


Seeking Stories on Personal Experiences with Undiagnosed Illness

Editor seeking submissions for proposed anthology – IN LIMBO: Medical Professionals, Patients & Their Loved Ones Share Strategies for Living With Undiagnosed Illnesses. Seeks well-written articles based on personal experience from those in the medical and counseling communities, from patients, and loved ones of patients. Editor: Cynthia Brackett-Vincent is co-editor of Contemporary American Women: Our Defining Passages (2009) and editor of the esteemed Aurorean poetry journal since 1995. Request Call for Submissions: Brackett-Vincent@encirclepub.com – B


More on FM/CFS and Body Weight

Re: The letter from S (“Fibromyalgia and Weight – Related?”) who said people suggest she’d recover from FM if she lost weight.

I am an FM/CFS and possibly Sjogren's Syndrome endurer. After I had my hips replaced 2 years ago (yes, I have OA too), the rheumatologist told me that if I lost 50 pounds, I'd feel fantastic. I joke that I should have gotten that promise in writing.

While I am thrilled to be 50 pounds lighter, and wearing sizes I don't ever remember wearing before, I don't feel fantastic. I don't sleep well, and have days where I can barely tell you my name.

I am now taking charge and have started taking 5HTP and low-dose Naltrexone, among other things, basically to see what happens. I am also pushing harder when I see my doc to get things figured out, rather than just increasing my meds… which do little if anything. I am hoping for a referral to an endocrinologist at the moment… – J

S – Don't believe for an instant that your weight is causing your fibromyalgia. Your sleep disturbance, autonomic dysfunction, and debilitating fatigue is causing you to gain weight.

I am a 55 yr old male who used to be pretty athletic, with a fairly large frame. I also have FM (possibly caused by a congenital immune deficiency, that was only recently diagnosed). After receiving IV infusion therapy every three weeks, my energy level is back by 50%-70%, depending on the day. My weight has dropped from 208 (34.5" waist) to 178 lbs (31.5" waist), due to the infusions, Dr. St. Amand, the UCLA endocrinologist's, hypoglycemic diet, and a small amount of exercise.

BTW, I am 5-10.5", and my optimum, pre-FM weight was 187 lbs (32.5" waist). You are right that being overweight exacerbates your FM, and I still have to be careful about about overdoing it, with rebound pain & fatigue an ever present possibility, along with orthostatic hypotension and the heart arrhythmias.

My sleep has improved, but it is still far from wonderful. It was so previously disturbed, that I actually tested positive for narcolepsy. Anyway, my life is improved with my IV immunoglobulin therapy every 3 weeks (the deficiency causes its own profound fatigue), but I'm ever cognizant of the fact I still have FM – and it still raises its ugly head if I don't pace myself.

Good luck in your battle – believe me, we all have had to deal with the "Doubting Thomases" in our lives, having this disease. I, for one, can tell you unequivocally, your weight did not cause your FM, it was the other way around. God Bless & Good Luck… – W


Persistent Infection in UK Kids with ME/CFS

Re: "Evidence of Persistent Infection in Children with ME/CFS from Across the UK"

Wanted to highlight the organizations that co-funded this very important research – ME Research UK, The Young ME Sufferers (Tymes) Trust, Search M.E. in Rosyth, Scotland, and Tenovus Scotland. – U


Rivka's "Dear Secretary Sebelius" Mini-Protest Video in Washington

Re: The video "Patient Mini-Demonstration Calls for End to ME/CFS Research Underfunding in Washington."

This is great! I hope to someday have that kind of strength/courage. Maybe some of us could start a campaign and follow Rivka's lead. – D

A really great video. I am overwhelmed by this young woman's courage and dedication. – G

I cried watching it. Thank you for giving me and so many others a voice, and thanks to your Mom, too. – T


'10 Americans' Documentary on Effect of Chemical Pollution

This video by the Environmental Working Group reports on toxic chemicals found in the blood of 10 Americans. The surprise ending sure inspired me to support chemical pollutant controls! – H


Kids with ME/CFS Push Hard to Keep Up

Re: The article “Postinfectious Fatigue in Adolescents and Physical Activity”

I think this research reflects the fighting spirit typical in people with ME/CFS/CFIDS at any age – not the lazy, shirking image the “all in your head” school has tried to project. It is published in the Archives of Pediatric and Adolescent Medicine, and the bottom line is: “Adolescents with chronic fatigue syndrome appear to be pushing themselves in an attempt to maintain similar activity levels as their peers, but paying for it in terms of fatigue severity and an increased need for sleep, particularly during the day.” – A


Good Cold/Flu Defense for Lyme or ME/CFS Patients?

Re: The article, "Priming Your Immune System for Cold & Flu Season"

Q: (Addressed to Karen Lee Richards at HealthCentral, where she is patient expert on chronic pain.) Regarding ProHealth’s article on products that improve the immune system to prevent infections. Is one better for Lyme disease/CFS? – D

A: Actually, I wrote that article for ProHealth. In doing the research for it, I was impressed by all of the scientific studies that were behind each of the products mentioned. While I think any of the products would be good, personally I would lean more toward… (To read Karen’s answer, click HERE.)


Trazodone for FM Sleep Problems, Anyone?

Q: I read with interest this new Spanish study of Trazodone for sleep problems in fibro. [“Trazodone for the treatment of fibromyalgia: An open-label, 12-week study”] I am interested because my MD has been experimenting with drugs to help me with insomnia & mentioned that trazodone isn’t addictive.

The Spanish researchers said it was “never systematically assessed in FM patients,” but in their study it not only helped depression & anxiety [it’s an ‘old’ antidepressant] but “markedly improved sleep quality, with large effect sizes in total Pittsburgh Sleep Quality Index score as well as sleep quality, sleep duration and sleep efficiency.” Of course like every drug tried for FM symptoms, it only helped some people, and about 20% of the people in the study had the serious side effect of tachycardia (rapid heart beat).

Do you know of any insights on this drug from FM doctors?

A: We did some Googling and found that another side effect of trazodone, though uncommon, can be orthostatic hypotension (click here for more info on the drug & its history), which is a problem for many ME/CFS/FM patients. Patient experiences discussed on our message boards seem mixed. But apparently ME/CFS & FM doctors have considered trazodone part of their 'toolkit' for years. 

For example, in the 2002 article “Top Doctors on Sleep: What the Experts Recommend for CFS & FM Patients”,  Dr. Charles Lapp wrote: “We have excellent luck with Trazodone (brand name: Desyrel), at 50 mg nightly. The nice thing about Trazodone is it doesn’t cause dry mouth and it doesn’t stimulate your appetite, so people don’t tend to gain weight on it like they do on Doxepin. The other thing is that it works best in the early morning hours. It puts you into a deep stage three and four sleep. If you are one of those persons who falls asleep pretty readily, but then wakes up every hour, or wakes up wide awake and can’t go back to sleep, Trazodone may be the thing that you want to take because it works best for that sort of problem.”

Others who've mentioned trazodone include Dr. Mark Pellegrino, Dr. Derek Enlander, and Dr. Jacob Teitelbaum.


Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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4 thoughts on “From Our Readers – Comments & Suggestions – 09-29-10”

  1. justplainsandi says:

    i get so tired of whine, whine, whine, it didn’t work for me, so it can’t possibly have worked for anyone else and will never, ever work for anybody, if it worked, it was something else. i got sick when i was 13. i’m now 71. big patootie. i’ve tried this, that and the other, including ignoring it because it “didn’t exist,” because, for most of my life, even the migraines that started when i was 4 “weren’t physical.” i’ve had to give up a profession, relationships, a child i couldn’t support in a divorce i had neither the resources nor the energy to fight effectively.

    i’ve been homeless 4 times, and had multiple injuries and, by giving up my need for control, had an interesting and exciting life. my most recent graduate degree was earned in 2005, only to learn once again that my body couldn’t even handle this new profession that i had thought would work. oh, well. grieve again for a couple of years, and big patootie.

    life goes on, and it’s not the end yet. i have come a much longer way than i once would have ever thought possible. not where i wanted to be, but looking back, where i wanted to be wouldn’t have been as interesting and filled with the unexpected and unexplicable, even sometimes magical and miraculous.

    this year, for the first time, through one of those tales of recovery, i learned something new that i can actually do and that actually shows some promise of filling the last of the gaps. i’m working on the necessary support systems, skills, and awarenesses to do it on my own, since i don’t have a partner like she did. when all is in place, i’ll start it for real, with my own idiosyncratic composition of support from multiple approaches to health, much based on research built on hints from this prohealth website.

    wimp out and whine while that’s where you’re stuck, but don’t leave it there. no matter how bad or weak or tired or defeated, discouraged, sad, angry, in agony you feel, i’ve probably been there. if you’re not dead yet, it’s not the end. and if you’re only dependent on external authorities, conventional western understanding of embodiment, and ama medicine, you’re selling yourself and life short.

    livingness is far more vital, complex, and alive than any single discipline can ever be, least of all one that is founded and built upon descriptions of dead matter. no matter how much new stuff you pile on top, our scientific descriptions are still based on stuff cut out of dead bodies.

    use everything you can, but never let it break your spirit or your bank. they’re all potentially partly right and partly wrong. life and truth will always be larger than the words or ideas we try to use to contain it. sandi

  2. blacksnake says:


    I get the sense that you’re saying something interesting. But I have no clue whether you’re even for or against the thought that people can recover. Any chance of setting your response out with punctuation and paragraphs?

    Peter W

  3. eljulia says:

    Trazodone has been a life saver for me–as soon as I try to do without it I’m unable to get to sleep or stay asleep. Recently I added Fibro Sleep to the mix, and those two things have been my perfect solution. I’d highly recommend asking your doctor about Trazodone if you’re having trouble with the whole sleep issue.

  4. IanH says:

    Sandi, thanks for your comments,
    I am not saying that people cannot recover totally but that I have seen no evidence in the literature nor in those people I have contact with. All I have seen is adaptation to the illness but which is all confounded by very bad case definition and diagnostics. This has not stopped me from trying everything under the sun over the 15 years or more. I have settled on a regime which I think is best for me, everyone has to do the same for themselves taking hints from others. When I study the biochemistry/immunology that best explains ME/CFS/MCS/FMS I see no cure until more is known about what is upsetting the immune system. Symptom treatments fall out of this knowledge, such as:
    Magnesium, Alpha Lipoic Acid, Vitamin D, DHEA/Melatonin as well as avoiding toxins that tax the immune system (including smoking and obesity)etc. but each one of these is changing a tiny part of the whole. The more tiny parts we can moderate the better we can feel. As a Psychologist I am also very aware of and prone to the placebo effect. In all of it I see no cure therefore no recovery. I am a scientist not a religious prophet and can only speak from a scientific background.

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