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From Our Readers - Comments & Suggestions 08-04-10

  [ 17 votes ]   [ Discuss This Article ] • August 4, 2010

Tips for Managing Orthostatic Intolerance (Problems On Rising to Upright Position)

I like the ME/CFS Australia site ( They gather news from all over the world, like this article by the CFIDS Association of America on “Top 10 tips to manage orthostatic intolerance on your own.”  - Z


Find a Support Group for Interstitial Cystitis, Painful Bladder, Pelvic Pain

The Interstitial Cystitis Association has a Support Groups Directory with an informative state-by-state list of groups and contacts in the US. There’s also an international directory, information on how to start an IC support group, and a link to the ICA’s facebook page ( - O


Cher's Illness - 'Just' Epstein-Barr Virus, or ME/CFS?

According to this article on "Celebrities With Diseases" in the ‘late 1980s” when Cher was diagnosed, the doctors called the problem simply “infectious mononucleosis” - EBV. Then later she says they told her that her constant illness was “crazy.” She has been too ill to work for various periods, the latest being 2008, and still refers to it as EBV. If there were an accepted diagnostic test or treatment for ME/CFS, the mystery and questions about the “name” might be settled for so many. - W 


Glad Michael Mayes is on Wessely's Case

Re: "Paper Blasts 'Incoherent' Wessely Psychosocial Theory of ME/CFS" by Michael Maes, et al.

What a relief to hear some sense at last! It certainly is about time the biopsychosocial model for this organic disease was well and truly put behind us. This model has done a huge amount of damage to people with genuine CFS/ME - i.e., as defined in the Canadian Criteria. Many patients have treated with contempt by their doctors and even laughed at when they describe their symptoms; some doctors are still saying that they do not believe in ME and that ME does not exist. Consequently, many patients with CFS/ME are being denied appropriate testing, assessment and the corrective treatment that may well be developed by concerted efforts on the part of the UK government, the Medical Research Council and the National Institute for Clinical Excellence to promote and support biomedical research into this disease to establish reliable biomarkers at least and effective treatments at best; who knows, possibly even a vaccine.

Far too much time, effort and money has gone into psychological research into CFS/M.E and the results have proved conclusively thus far that psychologically-based so-called "treatments" are not effective. CBT and GET are available for patients with other chronic illnesses, including heart disease, cancer and AIDS. If CBT, GET and GAT were the only "treatments" available for these diseases there would be astonishment and public outcry. Why then, in the face of so much existing research evidence of the organic processes at work in CFS/ME, is so much public money spent on psychological research and "treatment" approaches for CFS/ME in the absence of any scientific evidence of any "psychosocial" element, at the expense of biomedical research? - J


Positive XMRV Suppression Fallout

Re: "Outrage over suppression of FDA-NIH's Positive Paper"

Excellent de-bunking. The history of this illness will prove to be an outstanding example of political mischief. - I


The Petition Urging Publication of FDA-NIH Article

Re: "A petition to US officials urging HHS permission to publish FDA-NIH XMRV article"

Do we really want the HSS to publish the studies now when they might not be valid? Sometimes in science, studies need to be reviewed, though not usually this late. Hopefully they are double checking to make sure the studies are valid. At this time, I think a petition is premature until we get more information. - G

The research should be published whether negative or positive findings are being reported. The only thing which should stop publication is poor scientific method casting doubt on reliability or validity.

Those papers have already been reviewed: Publish them NOW. If we don't demand they be published, there won't BE any more information. Perhaps you're not aware that CDC has been trying to make out that CFS/ME is a mental disorder for nearly 30 years and has not spent their meager allotment of research money for CFS on finding the biomedical cause(s). They also arbitrarily changed the definition so it now includes lots of depressed and anxious people who do not have the biomarkers of CFS, thus diluting the cohort to the point it is meaningless. Patients familiar with this now call the CDCs brand of psuedo-CFS "Reeves Disease." Even with this diluted cohort, the CDC should have found XMRV in a smaller percentage of healthy controls, as have other researchers in Japan and Germany. Finding NO XMRV is a signal that they couldn't find it, not that it isn't there.

Since publishing in Science mag, the Lombardi group has continued to research XMRV and has now found it in 95% of CFS patients, in a cohort of international patients. Immediately after their research was published, head of CDC Reeves told the NY Times he didn't expect to find it. And their study was completed months ago, so they have had plenty of time to go back and review why they didn't find what other real researchers have found. (The European Failure to Find studies were done by and for the psychiatrists who have control over the ME/CFS field, so their quick and dirty studies were intended to squelch interest in XMRV as a possible cause.) This is politics. It is not a scientific debate. The CDC is trying to disappear CFS once again, as they have done for so long. In the internet age, they won't get away with it this time. - O


Can't Praise Hospice Care Enough

There is nothing available presently that you can do for a dying person that will bring greater personal benefit than Hospice care.

My step father was cared for by Hospice as he died from lung cancer, my mother has moderate Alzheimer's, and when the time comes I will call in Hospice for her. And I hope when my time comes Hospice will be there for me. I cannot say enough good things about them. …They are a dedicated group and many of them are drawn to the service because they have been through the loss of a loved one themselves. In case it has not been mentioned, Hospice is fully paid for by Medicare. - I


Hospital Guidelines for MCS Involve MD-Patient Pre-Planning

Here are some Multiple Chemical Sensitivity patient guidelines [for hospitals] from the state of South Australia: ( - D

[Note: This concise, bullet pointed guide, developed by the South Australia Department of Health, emphasizes preplanned admissions (e.g., allowing patients to bring selected items from home, even their own linen and foods, where helpful); training of designated MCS patient coordinators & cleaning staff members (e.g., use of baking soda for cleaning); and an emergency room routine for when pre-planning isn’t possible.]


NIH Invests $3.1 Million in Bastyr Trial of Integrative Breast Cancer Care/Therapy

"The grant - awarded jointly to Bastyr University and Fred Hutchinson Cancer Research Center in Seattle by the National Institutes of Health (NIH), National Center for Complementary and Alternative Medicine (NCCAM) - will officially fund a study entitled "Breast Cancer Integrative Oncology: Prospective Matched Controlled Outcomes Study." The five-year award will allow clinical investigators at Bastyr and the Hutchinson Center to undertake a rigorous outcomes-based research study. Investigators will track clinical outcomes for people with breast cancer who, in addition to standard conventional care (such as radiation therapy or chemotherapy), receive complementary care at the Bastyr Integrative Oncology Research Center (BIORC). Those results will then be compared with outcomes of breast cancer patients (of similar demographics) who do not integrate CAM care with their conventional care.” - J

[Note: Breast cancer patients may also want to check out Bastyr’s trial of (“turkey tail” – Trametes versicolor) mushroom extract to support stronger immune response after radiation therapy.]


VA Spending $2.8M on Trials of Therapies for Gulf War Illness Research

This is a real disappointment (VA Officials Approve $2.8M for Gulf War Illness Research"). Even though they had to admit finally that we are really sick, they're spending a pittance and putting the emphasis on exercise and "mindfulness-based stress reduction"! The only studies that might have some science behind them - antioxidant and antiinflammatory supplements, and drugs - will be a four-year trial using animals.  We need to demand better. - H


Info on Fludrocortisone (Brand Name Florinef) for ME/CFS

Here is an interesting blog by a young, debilitated Australian ME/CFS patient who just started treatment with a drug called Fludrocortisone. He has done a lot of research on this drug and its risks and possible benefits, and will be reporting the effects on him. Apparently Dr. Bell in the US finds the drug works well to increase activity levels in about one in four patients, so this is a blog many might like to follow. - B


Are ME/CFS Patients' Fingerprints Really Different?

I have occasionally read that some CFS patients "lose" their fingerprints… I was sooo curious about my fingerprints. So I marched my sick ole self down to the local jail and got my fingerprints professionally done. And lo and behold they are all screwed up! The print tech said that my fingerprint ridges are very flattened, deteriorated. The patterns were very faint, almost unreadable. I am only 40. I asked her – “Well what are they supposed to look like?" And she was kind enough to quick do one of her own fingerprints to show me what normal looks like. Big difference between hers and mine. So now I know that if I try to commit some kind of crime I won’t even have to remember to wear gloves. - L


'Reasonable' FDA Opioid Management Plan Proposal Shot Down

Karen Lee Richards is a chronic pain reporter, and she wrote not too long ago about how the FDA seemed to be coming up with opioid drug Risk Evaluation and Mitigation Strategies (REMS) that were "surprisingly sensible" from the standpoint of chronic pain patients' their doctors' needs. Sadly, her latest article reports on how the proposed plan was shot down by a committee that was more concerned with 'fighting addiction' than safe pain management. She has a suggestion for how pain patients and advocates may still be able to influence this situation. - U


Lyme Researchers Pay Well for Patients' Blood Samples

Jeff Daniels posted the following on Topix Atlanta (a Lyme disease blog) - A

“Researchers Need Help from Lyme Disease diagnosed people! There are a number of research organizations attempting to better understand Lyme disease as well as to develop better diagnostic test kits. On the diagnostics side, biotechnology companies like SeraCare Life Sciences and BioSpecialties Corporation run a number of diagnostics research studies for people diagnosed with Lyme Disease, paying participants $400+ to donate blood samples which are used to develop Lyme Disease diagnostics test kits. On the research side, Columbia University and the Lyme Disease Research Foundation of Maryland are researching the proteomics, diagnostics, and epidemiology of Lyme Disease. On the clinical trial side, the National Institute of Health sponsors a number of clinical trials.

"There are many programs out there where you can GET PAID to help Lyme Research, the most active of which are below:"


Note: This information has not been evaluated 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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