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More Research Info?

Q: This is the best site that I know of for keeping people abreast of the latest in research developments for causes and treatments of ME. However, the abstracts are often frustrating because I, and surely others, would like more details on some of the articles. Can you either include more information on each or add a link for each to the main source? I am, by default, the person who communicates with our county's ME support group, and I send these HealthWatch's along regularly to the group. – Billie

A: We, too, wish that we had the full text of the research articles so that we could summarize the more limited or unclear abstracts better or provide links to full articles. Unfortunately, the full text is almost always available from the journal publisher only for a fee, and that becomes quite expensive since we try to cover as many abstracts as possible. When the occasional article does offer free access to the full text, we always provide the link. Local medical center libraries are usually happy to let people come in to read or copy articles from journals they subscribe to, but their budgets have been squeezed too in recent years so they often won’t have the one you want.

Does This Product Really Work?

Q: I've been reading the published success stories of people who claim to be cured of CFIDS and Fibromyalgia with [a non-prescription product advertised online] and wanted to know if anyone has tried this product or knows someone that has. – Pam

A: The best place to ask for others' experiences with a specific drug or health product is the ImmuneSupport.com Message Board. However, if you work in this field long, you begin to recognize the “red flags” in health product ads, and the ads for this product do contain several:

For more information about analyzing health-product advertising, read Karen Lee Richards’ article “Let the Buyer Beware.” But the bottom line in considering any change in your health support regimen should always be to research and discuss the available information and implications with your physician and/or a pharmacist.

CFS and FM the Same?

Q: I just read your article re: Dr. St. Amand (“Q&A Session with R. Paul St. Amand, MD”) and was exasperated to see that he thinks that CFS and FM are manifestations of the same disease. How is this possible if a subset of CFS patients do have inflammation and high active viral levels? I got CFS after a bad bout of mono 19 years ago and am beginning to wonder if those of us in this subset even have CFS. If we don't, I'd like to know what we do have so that it can be treated.

I'm currently on the experimental Valcyte protocol. It is the first time that I've tried a medication and it's actually helped. The guai protocol did nothing for me and I think that Dr. St. Amand's claims are inaccurate, particularly with recent research calling for subgroups in CFS. – Lolly

A: You ask a good question. Dr. St. Amand did not explain why he believes ME/CFS and FM are manifestations of the same disease. Nor did he elaborate on how his phosphate theory might fit into the picture. This would be a good question to ask in his online patient forum (http://fibromyalgiatreatment.com/board).

A number of experts believe there is a relationship between ME/CFS, FM and several other illnesses such as restless legs syndrome, irritable bowel syndrome, migraine disease, etc. Several years ago, Dr. Muhammad Yunus proposed a new paradigm that he called “Central Sensitivity Syndromes,” under which all of these seemingly overlapping conditions fall. While each condition is different, there seems to be a common thread of central sensitivity running through all of them.

Where to Turn?

Q: I don't know where to turn. I'm getting more ill by the week. My insurance company won't approve my short-term disability claim. They just keep saying they need more information. My so-called CFS specialist thinks I should be back to work, that the symptoms I am displaying aren't CFIDS related. If I'm up for any length of time, more than an hour, I get flu-like symptoms, become weak, cold, and dizzy. I have to go to bed – sometimes for days. My husband has seen it with his own eyes. He's taking me to see her next week and telling her what he sees and that she better figure out what is wrong, fast, because I am on the border of losing my job and my health insurance. I just don't know what to do or where to go, except to a lawyer. – Nona

A: You are wise to take your husband with you to your appointment. It can be helpful to have someone who knows you well describe the differences they’ve seen in you and how you function (or don’t function) on a daily basis. Sometimes the patient is just too sick to be as assertive as may be necessary. If your doctor doesn’t give you the help you need, even with your husband’s help, it may be time to find a new doctor, or as you suggested, talk to a lawyer.

There are two sites that may be helpful in finding a good disability attorney: Mary Schweitzer’s Disability Benefits Information website (http://www.cfids-me.org/disinissues) and the “Disinissues Good Lawyer List” (http://www.cfids-me.org/disinissues/lawyers.html#states)

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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 condition, illness, 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.