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Letters From Our Readers - Comments & Questions 9-19-07

  [ 430 votes ]   [ Discuss This Article ] • September 17, 2007

Appreciates Access to Treatment Protocols

I was diagnosed with CFS/ME in 2000, but had been suffering the symptoms a long while before the diagnoses. With the help of my doctor near Perth in Western Australia, I got my life back on some sort of even keel after about two years. We moved to the south coast of Western Australia and after a while I went down hill again… Then in one of your newsletters I read an article by Dr. Sarah Myhill, who is based in Wales. Her article made a lot of sense to me so I downloaded her free book* and started reading. She explained everything so fully I felt that at last I was beginning to understand what is happening to me.

I ran the idea about following Dr. Myhill's regime past my local GP, but was virtually brushed aside. She said it would be too expensive, etc., so I decided to try it all for myself. I have been on her diet and supplements…since mid-July and am at last starting to feel better… I know it will take a while and that, because I'm 65, my age is against me. However, I am much more positive and will continue to stick to those things I know don't have an adverse effect. Also I'll stick to having my protein in the morning and my carbohydrates in the evening.

I really appreciate the fact that you put out the newsletter and enable people like myself to have access to all the treatments that are out there. I am sure that we are not all the same and that some treatments which may suit one person may not suit another, but at least we get the opportunity to try. Thank you. - Jane

[Note: See “Hypoglycemia (low blood sugar) a problem for many Chronic Fatigue Syndrome and Fibromyalgia patients, but treatable,” which is an excerpt from Dr. Myhill’s free 179-page online book – Diagnosing and Treating Chronic Fatigue Syndrome.]


Concerned About UK Clinical Guideline’s CBT and GET Suggestions

Re: “UK Issues Guideline for Diagnosis & Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy)” - I just started reading the physician document, NICE clinical guideline, and was very concerned about a suggestion made under Specialist CFS/ME care section. "Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit."

I have used both approaches. I am concerned with the wording, as this seems to suggest that CBT is an intervention to improve CFS/ME. My review of the research does not suggest this at all, but rather it helps a person cope with their symptoms. Secondly, graded exercise does not have clear evidence of benefit. There have been a number of studies (some I believe can be found on this site) that suggest the opposite is true. On a personal level, I used graded exercise under the direction of my doctor for a year only to find my condition worsen.

Thus my personal case study supports some of the research that indicates that graded exercise has a range of results and should be very carefully considered before implementing. – Leomonkey


Patients Must Be Taken Seriously

Re: “Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies” - When a patient's illness is not taken seriously, major contributing factors can be missed. For example, I know of someone with an undiagnosed sleeping disorder who was prescribed CBT [cognitive behavioral therapy], because according to the doctor, the illness was a “psychological” problem. If this patient had believed her doctor she would have had an extra problem: not only an unknown sleeping disorder, but also a [perceived] psychological problem which she would not be able to get rid of because the measure to determine progress in that area would be the tiredness. Progress would mean a decrease in tiredness. This would probably not have happened until the sleeping disorder was discovered and treated.

As with any disease, the psychological factor is important. However, to simplify the whole disease as psychological certainly does not validate the patient’s experience, and is perhaps not even in line with reality. As someone's psychological state is important in all coping and recovery, a doctor's responsibility should also include fostering a positive state of mind in his/her patients, including those with ME-CFS.

This study is a positive contribution in helping doctor's treat patients with ME-CFS in such a way that they are most helped, and find support in the process of coping with the disease. – Ilseke


Allergy to Eye Makeup?

Q: I was wondering if you have ever heard from any CFS/Fibromyalgia patients who have experienced a sudden allergic reaction to eye makeup. I was diagnosed with CFS in 2002. I had always been able to wear makeup without a problem, but since this past June, each time I wear makeup on my eyes, they become irritated and feel as though there is glue in them. I have since tried different brands of eye shadow, mascara, and liner, but they all gave me the same reaction. I recently read an article that identified talc as a likely cause of allergy symptoms, so I tried a mineral based makeup that is talc free. I am able to tolerate it for a little while, but my eyes still eventually become irritated. I would appreciate any information you can give me.

A: Yes, a number of ME/CFS and FM patients report sensitivity to makeup. And, yes, allergies do sometimes show up very suddenly. Generally, a pure mineral makeup that contains no additives is better tolerated by those who are hypersensitive. When applying eye makeup, be careful not to get too close to the lash line. Use mascara only on the tips of your lashes. Keep eyeliner and shadows well above the lash line. If those things don’t work, you might try consulting a dermatologist for suggestions. It’s important not to continue using eye makeup if you cannot find something that you’re not sensitive to because repeated irritation can lead to more serious eye problems.


ME/CFS History in Japan?

Q: Thanks for your newsletter and support. We are all familiar with the terrible history of CFS/ME in the West - the disbelief by the medical profession, yuppie flu, etc. But I was wondering if it has a similar social-medical history in say Japan, a non-western, developed country? Can you shed any light on, for example, the medical profession's view of the condition there and how well known or not it is in the general community? - KR

A: You ask a very interesting question. Japan has six research centers that have been doing extensive research on ME/CFS. In a June 2006 study, Japanese researchers successfully sorted the blood of healthy subjects from that of diagnosed Chronic Fatigue Syndrome patients with a 97 percent accuracy rate. (See: “Blood Test Shows Distinct Promise as Tool for Diagnosing CFS”) In June 2007, the results of 15 ME/CFS studies were published in the “Japanese Journal of Clinical Medicine.” Some of the areas studied include: viral infections and herpesvirus reactivation, neurotransmitter activity, serum properties and testing, sleep disturbance, and genetic background and marker genes. They have also evaluated the prevalence, diagnostic criteria, and medical treatment of CFS in Japan as well as differentiating between ME/CFS and psychiatric disorders.

How ME/CFS is viewed by the general public and local physicians is more difficult to determine, largely because it’s difficult to find that kind of discussion in English. Further complicating things is the fact that ME/CFS has also been called "Low Natural Killer Cell Disease" in Japan. There is a Japanese Association for Chronic Fatigue Syndrome, but again little information is available in English. You might try posting your question on the message board. Someone there may know more about how ME/CFS is perceived by the general public in Japan.

Note: This information has not been evaluated by the FDA. It 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 personal healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.

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