From Our Readers – Comments & Suggetions 10-28-09

Drs. Enlander and Kerr to Test 500 Blood Samples for XMRV

I went to Dr. Enlander [in New York] this week, and they drew blood for an XMRV trial he and Dr. Jonathan Kerr [St. George’s University of London] are doing. They are going to collect and test blood samples from 500 CFS patients. They couldn't tell me how long it would take for the results to come back, but at least we know that more research is under way, and quickly…. I believe the samples are being shipped to London, where Dr. Kerr will be overseeing the testing. I didn't have to pay anything, presumably because it's for a clinical trial. – S


$600K Aussie Study of CFS/XMRV Marker Test Now Recruiting

[This research at Bond University in Queensland] may be of interest to us Aussies. And I thought we would be waiting for ages for something like that here. Hopefully some sort of treatment too. – H


Is XAND Meant to Be New Name for ME/CFS?

I Don’t Think So. [When the Whittemore-Peterson Institute refers to ‘the new disease entitity” XAND – X associated neuro-immune disease] what it is saying is that XAND is a category of disease that could include ME/CFS and other illnesses; not that XAND would be the new name for ME/CFS alone.

In other words, it's like saying that ME/CFS is a neurological illness; there are other neurological illnesses, so we have not started referring to ME/CFS as neurological illness (or NI) instead of ME/CFS. XAND basically narrows down the type of neuro-immune disorder even more, but it is still a category that could include other illnesses, as well. – A

Seemingly Yes. I think what they did was create a new disease category. However, I've also read things like this:

"Daniel Peterson, MD, medical director of WPI, added, “Patients with ME/CFS (XAND) deal with a myriad of health issues as their quality of life declines."

"Those with XAND (ME/CFS) and/or fibromyalgia, interested in participating in research studies to further the development of diagnostic tests, should complete the questionnaire available at"

…Which suggest they're trying to differentiate between cases of ME or CFS associated with the XMRV, and cases that are not. So it really is confusing. – P


Flu Vaccine Package Inserts – Ingredients, Warnings & Side Effects

There’s a website that lets you read the package inserts for all the vaccines currently scheduled to be administered to populations worldwide for the N1N1 swine flu. You can see what each contains and does not contain. – M


E-Mailing Hillary Johnson’s NY Times Op-Ed Piece to Friends & Family

I read it might be a good idea to email Hillary Johnson's New York Times Op-Ed piece, "A Case of Chronic Denial" to family and friends to let the paper know there is a lot of interest in CFS. – S

[Note: The Times does keep track, and also posts a "Most E-Mailed List" (where this article remained in the top 10 for days) – see listing to the right of the article.]


How Can I Find a Message Board Post I Made Months Ago?

Q: I was searching for one of my old posts in the ProHealth ME/CFS Message Board so I could share the information with others today, but no luck. How can I find my old posts?

A: To find old posts in any of the ProHealth message boards – your own or someone else’s – click on the username in the upper left hand of a post by you/that person. You will see a new page – and under the name you will see "Posts.” Click on "posts" and all old post titles will be shown with their dates. Click on the title you want to see.


Chloramine Sensitivity & ME/CFS Head Congestion, Sinus Problems

I've just been reading about the possible effects of chloramine in water supplies. In many areas of the country, chloramine has replaced chlorine as a disinfectant. You can check with your local water agency to find out if they use chloramine. Unfortunately, chloramine comes with a whole list of possible side effects, including respiratory irritation and sinus problems. See to learn more about it.

It's much more difficult to get rid of than plain old chlorine. It's just something to think about. – M


We Are Amazing People

I want to compliment the many people who post [on the ME/CFS & FM Message Board]. I am so impressed that so many of us laymen have become medical experts, even though we have cognitive problems. I understand more than the person walking down the street. As we all know, lacking knowledgeable doctors, we have to become our own doctors… I think we are amazing people.

I think there is a story just in our determination to do what is needed, despite our limitations, including cognitive… We are responsible for our own future and we can't look to someone else to do things for us. – T


How I Have Managed My Opioid Induced Constipation

I am on morphine, high doses because I have been on it for almost 20 years, slowly increasing as tolerance developed… It was last spring when everything cleared up, after I started taking colostrum. That was either the last piece of the puzzle or it worked on its own. I just took 2 or 4 a day for about a week to kick start it, and since then I just take 2 at night on days if I notice a change "towards harder." The 2nd kind of colostrum capsules I bought has probiotics in it too.

The other supplement is Vitamin C – people keep telling me that "taking too much Vitamin C can make your bowels loose," so I tried it! It seems more like a trigger, esp. 'cuz I take it in the morning and tell myself it is a trigger. I have never had a bout of diarrhea from Vit. C.; I take about 2000 mgs. at a time, sometimes twice a day.

The diet is a little weird. Anyone with IBS will tell you that "weird doesn't matter if it helps." [To see the ingredients of the “Constipation Cure Diet Milkshake,” click here.] Blend it all together, drink it down. Oops, I forgot veggies. I just have a little every day, raw mostly. And no, I don't use any [other] fiber… – S


Will ME/CFS Ever See Outpouring of Support Like Other Diseases?

I have to say – October, although my favorite month in Colorado, always makes me feel a bit sad and downright envious. There is SO much support for Breast Cancer Awareness, and THANK GOD! What an amazing thing that we're helping to close the door on this disease.

But, at the same time – when I see pink ribbons everywhere I go, and am asked to donate everywhere I go (I donate $100 every October), see commercials every ten minutes, read it in every paper and magazine, see businesses supporting it – it's literally everywhere. How wonderful it must make these people with this horrible disease feel to have such an outpouring of support.

And then there are those of us with CFS.

• My family doesn't believe it,

• My work doesn't know it,

• Dozens of doctors have turned me away not knowing what to do with me,

• The press/media think it doesn't exist…

And I feel so lonely & isolated. I wish there was some kind of support for us. – B


Media Attention & Dr. Donnica Moore on ABC News

To those who don't understand why everyone is so excited by the XMRV discovery – THIS alone [Dr. Donnica Moore on ABC News] is a good reason why. The amount of positive (or even just neutral or balanced) attention our illness is getting now – by the media, doctors, scientists, research institutions, etc. – is absolutely unprecedented. This is SUCH a game changer. – Z


Interesting Article on Colostrum Research

I found this citation on colostrum research in the Alternative Therapies Message Board (“Prevention of influenza episodes with colostrum compared with vaccination in healthy and high-risk cardiovascular subjects). Pretty interesting. – K

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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One thought on “From Our Readers – Comments & Suggetions 10-28-09”

  1. Sandy10m says:

    I am one of those folks affected by chloramine directly. I lived in a suburb of San Antonio a few years ago, and one January I noticed that my previously gone reflux/heartburn problems had returned. It was like a switch. I had been eating healthy and had not changed a thing. I kept doing my food diary and noticed that my symptoms were worse when I drank water that I brought from home. I was using the Brita filter for my tap water. I decided to call the water company, and I found out that on that exact day in January, the water company had changed from chlorine to chloramine. From that day on, I no longer drink tap water from anywhere and have to rely upon bottled water or reverse osmosis filtered water. So far, no problems with that. Good luck.

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