Letters From Our Readers – Comments & Suggestions 06-03-09

Impressions of London ME/CFS Conference May 29 (Including Dr. De Meirleir’s Presentation)

I am the Patient Advocate for my 35-year-old daughter. I travel to conferences to observe what is going on in the field. This is not a scientific report. It is a record of my impressions, as limited as they may be. They are presented to give some impression of this conference to those who were not able to attend, particularly patients and patient advocates. I apologize ahead of time for my own biases and editorializing. A DVD of the conference will be released in July and can be ordered now. – C (www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1351876)

[Note: To read more about Dr. De Meirleir’s presentations at a press conference & the IiME Conference last week – “ME: End of an Era of Medical Negation” – click here.]


Physician-Rating Site Could Be Helpful

If you’re looking for a new doctor, it can help to check him/her out on the ratemds site (www.RateMDs.com) – G


Remembering Mom – The First Mother’s Day Without Her

I lost my Mom in October, and Mother's Day was very hard for me this year. I wanted to honor my Mom and wrote a letter to the editor of the Milwaukee Journal Sentinel about my Mom and about the need for funding for Alzheimer's research and support… I'd like to share, as I would guess a lot of you can relate to it. – GG (www.jsonline.com/news/opinion/44615992.html)


Nerve Block Research Gives Me Hope for the Future

Re: “Long-lasting Nerve Block Could Revolutionize Pain Management: Injectable local anesthetic shows promise for prolonged pain relief without toxicity.”

This Long Nerve Block breakthrough, I am sure, will give many of us pain sufferers some hope for the future. I welcome all trials that come through for pain management, without the drug dependency… Thank God for Science and Research… – D


Blood Transfusions, Not So Positive

Re: “Experts find little evidence for transfusions improving health; much for potential harm.”

This article is big news to me. I've long wondered if there was not some kind of "hush hush" attitude to questions about blood transfusions. I had a huge blood transfusion given to me many years ago [1976], and I became very ill after – fever etc. They said it was "mismatched antibodies – there are 100s of them and they cannot all be the same as in your blood." I wonder what kind of person I got the blood from? Come to think of it, that was about the time my earliest fibromyalgia symptoms started up. Nawww… could it be the cause? Doctors should hold off on giving transfusions unless it is urgently needed.

I found this article very interesting. It’s something I personally thought about myself over the years; how reliable and how many lives have been affected negatively in having a blood transfusion? I know a lot of Jehovah Witnesses have had successful surgeries and even survived back to optimum health after refusing blood at all. I think a lot could be learned from a study on these people against studies on others who have had transfusions. It’s a thought BUT I do think for our future this would be a good starting point on a very prevalent possibly life saving issue that could make such a huge difference to the health and future disease risk of tranfusion patients. – B

Check out transfusion-alternative research. There is a video entitled "No Blood-Medicine Meets the Challenge" and it allows individuals to become fully informed about the options that are available in the field of bloodless medicine. Leading experts in the medical community are interviewed and explain why some have called bloodless medicine the new standard of health care. There is also a video regarding transfusion alternatives available at this same website. – K


Muscle Stiffness & Spasm Info

Re: “Muscle Stiffness – When It Hurts to Move too Quickly.”

I am the type that gets muscle spasms when I move or stretch my muscles, and I find that moving slowly will help me avoid a lot of pain and cramping, so I probably fit into the "low magnesium group." If I have low magnesium and resting brings magnesium INTO cells, that explains my need for rest, right? – S


Low Dose Naltrexone & FM Pain Study

Re: “Inexpensive drug naltrexone appears to relieve fibromyalgia pain in Stanford pilot study.”

I'm happy that someone is looking at a drug for fibromyalgia that doesn't cost a bundle. I do have a question about it, however: if it is used for people with drug problems, won't that present a problem for the fibromyalgia patient who goes into an emergency room? Might the personnel there think the patient is a drug addict? – P

When I tried Low Dose Naltrexone, I had a very severe reaction to an amount my doctor said could not have caused reactions. I had slurred speech, extreme fatigue, was unable to sit up and was so weak I couldn't even call out for help…. I did talk to one person who did very well on LDN. It did not get to the root problems for me, and I was extremely sensitive to it, but then I am extremely sensitive to about every pharmaceutical as well as herbs etc – L


More Help for Dry Eyes

Re: Letter on "Tips If You Have a Problem with Dry Eyes"

My ophthalmologist has advised me to up my intake of flaxseed oil to combat dry eyes [rich in omega-3 fatty acids]. She also recommends preservative free Systane® eye drops. This seems to help. – J


Cancer-Killing Virus – Looks Like Good News

Re: “Dalhousie University cancer researcher shows common virus kills cancer stem cells.”

It seems to me that this is very good news in cancer research. Killing the cancer stem cells might be the holy grail of cancer cures, since many cancers spread even after a successful treatment of a particular tumor, which renders most cancer treatments as being "just a little help."

That the agent happens to be a virus adds to the mystery of human health. Maybe we need some viruses, just like we need many bacterial strains (of our total cell count, 90% belong to bacterial strains and other outside cells, only 10% are human cells). Maybe killing viruses has led to cancers? I think this research opens up many questions. – S


Videos I Made on My Life with Lyme

I put up a two part video describing my life with CFIDS and Lyme. I hope it helps some people. – C
Lyme Disease/CFIDS/ME and My Life Part One

Lyme Disease/CFIDS/ME and My Life Part Two


Gupta Amygdala Retraining Program™

Re: "Ashok Gupta Explains the Amygdala Retraining Program for ME/CFS/FM and Associated Illnesses."

At last someone is getting to the Source of the whole problem & it is happening in my own lifetime – Hooray! Oh man this is exciting to read the start of this line of treatment – I have felt for awhile now that the problem lay deep in my brain. And I am soooo sick of GP's prescribing me antidepressants which just blanket the brain imbalance for a few months until it just all busts out once again. I am definitely going to read his website & bookmark it & watch it. – F

• … I am fed up seeing " miracle" cure claims, which usually end up with desperate carers/patients paying over lots of money. I took my daughter to a Harley street clinic specialising in neurolinguistic programming, and whilst it reduced the anxiety caused by having ME, 6 years later she is not in any way cured. In fact she believes NLP was counter-productive, as it left her feeling that if she only tried harder, she would "beat" this illness & be well again. I've read about ME being called atypical polio. Would anyone recommend NLP or reprogramming of bits of the brain to cure polio? Sorry to sound so cynical, but I have spent lots of money on so-called cures, and none of them work. ME is like a jigsaw puzzle, and until we really know what causes it, how can we hope to cure it? –

I’m convinced this hypothesis is correct. Myself (f/53), having suffered from CFS for four years, came across the Program in the end of 2007. I tried it and recovered from the illness very much in the way as described and promised by Ashok on his web site, within 6-9 months. I consider myself fully well now and can do all the things I like. I'll always be grateful Ashok did this groundbreaking research and would develop it further into a DVD course accessible to other sufferers. – I


CDC's 5-Year ME/CFS Research Plan Now Posted – Feedback Until June 30

The CDC has posted its draft 5-year research plan and is soliciting comments until June 30. To provide feedback to CDC and the Secretary of Health about last week's CFS Advisory Committee meeting, you can use our simple form to send your comments, or send them directly to CFSResearchPlan@cdc.gov.
– CFIDS Association of America


Free Online Health Records Storage Service Courtesy of Mayo Clinic

This seems like something readers might want to look into. The Mayo Clinic is starting a free online medical record service where anybody can store “copies of health records obtained from providers, health plans, pharmacies, schools, government, or employers.” It’s secure, and patients can share contact info, records, etc. with any doctors without having to scramble to remember who did what when. (There’s a ‘Health Manager’ Demo video on YouTube) – W
Note: This information has not been evaluated by the FDA. It is generic, opinion-based, 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 “Letters From Our Readers – Comments & Suggestions 06-03-09”

  1. bettyg says:

    someone had mentioned about going to the above site and reading good/bad comments on the drs. you are thinking of going to.

    i used to highly recommend this site, but lately i’ve been made aware that many BAD comments are vendettas from 1-3 people who go on and on about bad drs. IT’S ONE-SIDED ONLY.

    they have a crudge against the dr. or a PERSONALITY CLASH, so types many comments and has their family/friends do the same thing.

    most people do NOT know about this site, so the GOOD DETAILED comments are not placed on there for that reason alone.

    i just want to caution you … these comments are NOT 100% RELIABLE! read them with a grain of salt please.

    bettyg, iowa lyme activist

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