Subject: #14 NIH Study on CFS Immune Abnormalities (fwd) I wasn't sure if people on the net got this routinely. It comes out from NIH and sometimes has some very good information in it. To subscribe, e-mail the bitnet address. Nicolette ---------- Forwarded message ---------- Date: Sun, 7 Feb 1993 05:04:54 EST From: CFS-NEWS Electronic Newsletter To: Multiple recipients of list CFS-NEWS Subject: #14 NIH Study on CFS Immune Abnormalities HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter -------------------------------------------------------------------- No. 14 February 7, 1993 Washington DC -------------------------------------------------------------------- NIH STUDY ON CFS IMMUNE ABNORMALITIES CONTENTS >>>1. NIH study on CFS immune abnormalities >>>2. U.S. Senate vote to affect CFS research funding >>>3. Physician's CFS network discussion >>>4. Lyme Disease electronic newsletter >>>5. Any Prodigies out there? ------------------------------------ >>>1. NIH study published on CFS immune abnormalities [The following is the full text of a February 5, 1993 news release from NIAID, a division of the U.S. National Institutes of Health.] "Immune Abnormalities Found in Chronic Fatigue Syndrome May Lead to Better Understanding of the Disease" Researchers at the National Institute of Allergy and Infectious Diseases (NIAID) report finding subtle immune abnormalities in people with chronic fatigue syndrome (CFS) that ultimately may explain why they develop the painful muscles and joints, tender lymph nodes and other symptoms associated with the illness. In the January issue of the _Journal_of_Clinical_Immunology, NIAID researchers Stephen E. Straus, M.D., Warren Strober, M.D., and Janet K. Dale, R.N., who with National Cancer Institute contractors Scott Fritz, Ph.D., and Barbara Gould of Program Resources Inc./Dyncorp, Frederick, Maryland, carried out the study, describe their analysis of immune cells taken from patients with CFS. Most notably, the CFS patients had significant differences in the number and character of one type of immune cell -- T cells that carry helper molecules, called CD4, on their surfaces. These cells, known as CD4+ T cells, orchestrate the immune response. During development, a CD4+ T cell acquires receptors enabling it to link with a single foreign invader, called an antigen. Thereafter, until the CD4+ T cell dies, it reacts only with that antigen. CD4+ T cells circulate in the blood either as "naive" cells that have not interacted with their antigen; or as "memory" cells that have interacted with their antigen, and upon re-exposure to that antigen quickly stir the immune system into action. Certain cell surface molecules distinguish the naive cells from the memory cells. The NIAID investigators found that, as a group, the CFS patients had a significant but slight reduction in the number of these naive T cells. In addition, whereas the patients had normal numbers of the memory T cells, a greater-than-average share of them displayed various adhesion molecules. Adhesion molecules act like address labels, enabling circulating T cells to home and attach to particular tissues. In summary, these findings suggest that although a greater proportion of CD4+ T cells had shifted from naive to memory T cells, sophisticated blood tests did not find excess memory cells because more had developed adhesion molecules, left the circulating blood and entered tissues. The researchers theorize that exposure to infectious agents or underlying neuroendocrine or neuropsychiatric abnormalities could directly or indirectly trigger this increased maturation of CD4+ T cells. Their findings also explain why the CFS patients, as a group, had a slight decrease in total CD4+ T cells, a decrease matched by the deficit in the naive cell subset. "This decrease does not indicate that CD4+ T cells are being destroyed, such as happens in AIDS," says Dr. Straus, "but that more CD4+ T cells appear to change location, shifting from the blood into the tissues. These tissue-based cells escape detection by research blood tests." None of the immunologic differences are large or frequent enough to constitute a meaningful diagnostic test for CFS, Dr. Straus says. Their observations do have clinical implications, however. Finding an increased number of memory cells with adhesion molecules, the investigators speculate, may help explain why CFS patients experience painful muscles and joints, tender lymph nodes and other associated symptoms. In the tissues, CD4+ T cells release molecules that help regulate the immune response. These molecules can cause mild inflammation and pain. "The same process causes pain in the intestines of people with inflammatory bowel disease," says Dr. Strober, another member of the team who is an immunologist and expert in inflammatory bowel disease. To test the validity of their theory of CFS pain, the researchers are now examining the function of various subsets of T memory cells taken from patients. Aside from the noted T-cell differences, the investigators found no other immune cell abnormalities in the CFS group. The cells examined included macrophages, which scavenge foreign debris; natural killer (NK) cells, the first line of defense against an invading organism; and B cells, which produce specific molecules that guard against and can destroy the invader. The researchers note that using frozen cell samples may have affected the NK cell measurements, however, because NK cells may not survive freezing as well as other cells. All 18 CFS patients in the study met the full criteria for CFS as defined by the Centers for Disease Control (CDC). None could work full time: six worked part time, and 12 could not work at all. Although seven patients had mild depression, none had more serious depressive symptoms. The group included 13 women and five men, ages 24 to 49, half of whom had been ill for more than 7.4 years. The syndrome had begun abruptly with an infectious-type illness in 17 of the cases. The investigators required that all participants be medication-free, except for occasional acetaminophen use, for at least two weeks prior to the study. They also had to adhere to a restrictive diet for at least four days prior to blood sampling. The healthy volunteers matched the patients in both sex and age. The researchers separately compared the CFS patients and the healthy volunteers with another group of 10 chronically fatigued patients as well. All suffered from a prolonged, debilitating fatigue following an infectious illness, resembling the onset of CFS. The fatigue patients had no alternative diagnosis but did not report enough symptoms to conform fully to the CDC definition of CFS. As a group, the immune profiles of these patients mirrored those of the CFS patients, indicating that forms of severe fatigue that do not completely fulfill the CDC criteria can show similar immunologic changes to those seen in CFS. Like other immunologic studies of CFS, this one represents a snapshot of one group of CFS patients. The NIAID study will continue for several years, however, to allow a more detailed picture of the disease in these patients to emerge. The data collected will be analyzed to determine if these or other immune differences found vary with time or correlate with symptom severity or recovery. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. U.S. Senate vote to affect CFS research funding The U.S. Senate is expected to vote this week on the NIH Re-authorization bill, which contains provisions which would strengthen research funding for CFS. A duplicate bill was vetoed last year by President Bush who objected to a provision which authorized fetal tissue research. President Clinton is expected to sign the bill if it is passed by the Congress, and the Senate will be taking up the matter as soon as they re-convene this Tuesday, Feb. 9. The CFIDS Association and other support groups are asking CFS patients in the USA to telephone their Senators' offices to support this measure. The bill is designated as Senate bill S-1. The CFS-oriented provisions in the bill will mandate the following: - NIH will make an annual report to the Congress for 3 years and will describe CFS research priorities; - NIH will establish an Extramural Study Section, i.e., there will be a formal program for NIH to fund CFS research outside of the agency; - NIH will include scientists and consumers who have expertise in CFS on the agency's advisory boards and committees; - continued authorization for the 3 regional CFS research centers that have been established. CFS-NEWS will continue to report on the progress of this legislation. [This article was based on information provided by the CFIDS Assoc. which is located in Charlotte, North Carolina.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Physician's CFS network discussion A CFS electronic discussion group for physicians is being created on the Internet, and will likely be linked to a parallel USENET newsgroup. The discussion group, named CFS-MED, is ready for Internet subscriptions now but the start of the group's active discussion will be delayed for a week or so until certain questions are resolved, including: - how best to notify interested physicians that the group exists? - how to gain the participation of physicians who have broad clinical experience with CFS? (the discussion will be much more useful if it can draw on such experience) - should the discussion be moderated, i.e. messages for posting will be sent to a moderator who checks that the message is appropriate for the list's definition (a medical discussion of clinical and research issues re CFS) - what to call the parallel USENET newsgroup (which will likely be in the alt.med structure)? There's already an alt.med.cfs; the name alt.med.cfs-med is slightly redundant; perhaps the name alt.med.cfs-physicians-talk would suffice. Any suggestions are welcome and should be conveyed to Roger Burns, the founder of CFS-MED (and the editor of CFS-NEWS). Mr. Burns may be reached at Internet address cfs-news@list.nih.gov, Fidonet address 1:279/14, or post a message to CFS-L or the CFS echo, or telephone to 1-202-966-8738. Internet subscriptions are available now and be obtained by sending the command SUB CFS-MED (where your name replaces ) to the Internet address LISTSERV@LIST.NIH.GOV or to LISTSERV@NIHLIST.BITNET . -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. Lyme Disease electronic newsletter An electronic newsletter devoted to Lyme Disease issues is now available on Internet and USENET. The symptoms of Lyme Disease can be quite similar to CFS, therefore this news resource for Lyme is mentioned here in CFS-NEWS. To subscribe to the newsletter on Internet and to obtain issues numbered 1 and 2, send the following commands: subscribe LymeNet-L get LymeNet-L/newsletters 1-01 get LymeNet-L/newsletters 1-02 to the address listserv@lehigh.edu . This is not a standard listserv such as on BITNET, so to get a list of appropriate commands send the command HELP to listserv@lehigh.edu . The newsletter's editor-in-chief is Marc Gabriel and the newsletter has been developed in cooperation with the Lyme Disease Network of New Jersey. [Information provided by LymeNet-L's editor-in-chief Marc Gabriel.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. Any Prodigies out there? Very active discussions about CFS are taking place on the Prodigy commercial network. However, the editor of CFS-NEWS is not currently subscribed to Prodigy and he is looking for a volunteer who may help to regularly exchange information between CFS-NEWS and the Prodigy CFS discussion. Please contact the editor Roger Burns at Internet address cfs-news@list.nih.gov or at Fidonet 1:279/14 or at Compuserve 73260,1014 or at telephone 1-202-966-8738 or at postal address 2800 Quebec St. NW #1242, Washington, DC 20008, USA. =================================================================== CFS-NEWS (ISSN 1066-8152) is an independent newsletter edited by Roger Burns in Washington D.C. and is distributed on the Fidonet CFS echo, on Internet, and through the USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the CFIDS/CFS BBS in Maine USA at telephone 1-207-623-8486 in file area H. Suggestions and contributions of news may be sent via Internet to CFS-NEWS@LIST.NIH.GOV, or via Fido NetMail to CFS-NEWS at 1:109/432, or post a message to the CFS echo or to newsgroup alt.med.cfs. Patients should read the resource file CFS-RES.TXT available on the BBS mentioned above and elsewhere. Copyright (c) 1993 by Roger Burns. Permission is granted to excerpt this document if the source (CFS-NEWS) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the RESOURCE file and other CFS files at the NIH file server. To obtain the resource file, send Internet e-mail to the address SERVER@CU.NIH.GOV with the subject line GET FTP CFS.RESOURCE (the message text is ignored). Or log in via anonymous ftp to cu.nih.gov or 128.134.64.7 with password=guest, directory=CFS, filename=RESOURCE. Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility; however, this independent newsletter does not represent the views of the National Institutes of Health. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or @LIST.NIH.GOV For back issues send the command INDEX CFS-NEWS to the LISTSERV address above and thereafter use the command GET CFS-NEWS to retrieve one of the monthly logs. =====================================================================