April 21, 2008
Hope For My Friend?
Q: I’m contacting you because a friend of mine suffers under CFIDS. He feels very bad (for already two years) and I’d like to help him in any way. A few months ago, I wrote mails to some researcher from the USA to find out whether there’s a medicine against this illness. Some of them answered that there could be an antidote in one or two years. That’s the reason for my mail.
Maybe you have news about a view of cure or you know some information about an antidote or something else. It’s so sad that I can’t help my friend, so I’m trying to find at least some rays of hope. Thank you very much for taking time. – Annika (from Germany)
A: Your friend is fortunate to have someone like you in his life. You’re a very kind and caring friend.
You don’t say whether the researchers who answered you gave you a name for the medication they were hopeful about. We think it may have been valganciclovir (sold in the U.S. under the brand name Valcyte). Valganciclovir, which targets the human herpes virus known as HHV-6, has shown encouraging results in research using it to treat CFIDS patients.
For more information about valganciclovir, read
“A Herpes Drug May Make Energy Soar for Chronic Fatigue Syndrome Patients.”
For an update on valganciclovir as well as information about other treatment options that have shown some success, read “Update on Antiviral Medication and Comprehensive CFIDS Management.”
But to keep up on the latest antiviral news and findings, visit the HHV-6 Foundation site (http://www.hhv-6foundation.org)
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Difference Between ME, CFS, FM?
Q: What, if anything, is the difference between ME and CFS and FM? – JAN
A: That question has been debated by physicians and scientists for many years. Some feel ME, CFS and FM are different facets of the same illness, while others believe they are distinct illnesses that share several common symptoms. Further complicating the situation is the fact that 70 percent of people who have been diagnosed with one, are also diagnosed with the other.
ME/CFS – ME (Myalgic Encephalopathy or Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) are often used interchangeably. In the past 20 years there has been, and continues to be, considerable controversy over both the name of the illness and its definition or diagnostic criteria. Myalgic Encephalopathy is a medical term meaning a disorder of the brain accompanied by muscle pain. Myalgic Encephalomyelitis indicates inflammation of the brain and spinal cord accompanied by muscle pain. Chronic Fatigue Syndrome is the name the CDC decided to give the illness in 1988 because they couldn’t identify its cause.
Generally speaking, ME/CFS symptoms may include:
- Fatigue that is persistent, relapsing or debilitating and does not improve with bed rest
- Short-term memory or concentration problems
- Sore throat
- Multi-joint pain without joint swelling or redness
- Muscle pain
- Headaches of a new type, pattern or severity
- Non-refreshing sleep
- Post-exertional malaise lasting more than 24 hours
- Achiness
- Brain fog
- Increased thirst
- Bowel disorders
- Recurrent infections
- Exhaustion after minimal exertion
Just as there have been many names for ME/CFS, there have also been a number of definitions. The best thus far seems to be the Canadian Definition. You can download a full copy of the Canadian Definition here (http://www.cfids-cab.org/MESA/ccpccd.pdf)
FM – FM (Fibromyalgia) is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The primary symptoms of FM are: widespread chronic pain, extreme fatigue, and sleep problems. Other symptoms which may occur include: allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.
Differences – Although there are many similarities, there are also significant differences.
- FM is identified by 18 distinct tender points (designated points on the body that are painful when four kilograms of pressure are applied), while ME/CFS is distinguished by post-exertional malaise (deep fatigue and exhaustion following physical exertion, which lasts more than 24 hours).
- Substance P (a neurotransmitter that sends pain signals) is elevated in FM but not in ME/CFS.
- RNaseL (a cellular antiviral enzyme) is frequently elevated in chronic fatigue syndrome but not in fibromyalgia.
- ME/CFS is often triggered by an infectious or flu-like illness, while FM is usually triggered by a severe physical or emotional trauma (for example, injury, illness, surgery, prolonged stress).
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B-12 Deficiency & ME/CFS Article?
Q: Can you please send me the most recent article on B-12 deficiency? I inadvertently deleted it from my e-mail. Thank you. Keep up the good work. – Martha
A: The condensed version of Dr. Myatt’s B-12 article, “The Vitamin B-12 – ME/CFS/FM Connection” is at http://www.immunesupport.com/library/showarticle.cfm/id/8749.
The longer, more comprehensive and detailed version of the article, “B-12 Deficiency in ME/CFS and FM May Provide Clues and Relief” is at http://www.immunesupport.com/library/showarticle.cfm/id/8784.
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List of Disability Lawyers?
Q: Some time ago you mentioned a website that was created to provide a list of disability lawyers. I lost track of that info, and wonder if you could repeat it? – Paul
A: You are referring to the Disinissues Good Lawyer List. It is based on recommendations or comments contributed by users of the Disinissues website – a discussion list for disability insurance issues. For more tips about disability-related resources on the web, follow the special message string in ProHealth’s ME/CFS & FM Message Board titled "Social Security Information.”
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Dr. Pall’s Antioxidant Protocol?
Re: "Antioxidant Suggestions for down-regulation of the NO/ONOO- Cycle from Dr. Martin L. Pall, PhD."
Q: I am curious about Dr. Martin Pall's antioxidant protocol for ME/CFS etc. (1) Do you carry a 'package' of the supplements, and enough for the whole 'treatment'? (2) In his directions, 5 steps, does one keep the first 'step' of antioxidants going, add in the second group, add in the third and so on? Or does one take the first group, end that when one starts the second, and so on? - Beverly
A: ProHealth does offer all of the preparations in the regimen Dr. Pall developed. They would all be taken daily, but Dr. Pall suggests that in the beginning you can phase them in at three-day intervals. They are not a “treatment,” but rather offer a rich supply of antioxidants & other nutrients that may help the body downregulate a biochemical problem Dr. Pall believes is common to ME/CFS, FM, and other illnesses - including tinnitis (ringing ears) and other inner-ear/balance problems, according to his latest journal article. We’ve spoken with Dr. Pall and hope to share a report from him soon on the sorts of responses people seem to be getting.
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How to Locate Thyroid Docs?
Re: Dr. Podell’s article “Low thyroid, hypothyroidism, and natural hypothyroid therapies – Should we treat with CytomelR or Armour ThyroidR even when thyroid blood tests are normal?”
Q: I live in Canada and it's not that easy to obtain Armour Thyroid here. I believe Armour Thyroid in the states is what Canada has labeled Natural Thyroid - meaning dissicated pig thyroid. My PCP doesn’t believe in Natural Thyroid. How can I find an endocrinologist willing to discuss alternatives? – April
A: Mary Shomon, author or several books on the thyroid and thyroid diseases, provides two lists of doctors on her Web site: “Top Thyroid Docs Listing for U.S. States” and when you scroll further down, “Top Thyroid Docs Listing – International.” As she explains, the listings are based mostly on patient nominations. We hope you will be able to find a good specialist reasonably near you.
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Note: This information has not been evaluated by the FDA. It is generic 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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