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.JULY/AUGUST 2003
In Our World
Our CFIDS group treasurer, Marvina Powers, her husband Leon and son Jeffrey lost their home to fire on a Thursday night in early June. Marvina and Leon were asleep when Jeffrey roused them and they were able to escape from the burning building. Jeffrey had also released the dogs, and later they were able to round them up. The fire evidently started in the carport ceiling, and their 1992 Taurus in the carport exploded. One of their daughters had just moved to the state of Washington, and her storage ready to be moved, was also burned. The Red Cross helped them with clothes, etc. the next day, and they were staying temporarily with another daughter. Cathy (472-7793), another daughter, was thoughtful in letting your editor know, since she in school out-of-town. The building was insured, and the myriad details of relocating after losing their home of forty years is our concern for them as they continue to live with disability and the complications of added stress. They were able to save their glass collection. Their computer and the CFIDS records were lost. Marvina, you’re very valuable, and we love you and yours, and thank you for the very large part you play in the Greensboro CFIDS/ME/MCS Support Group. [P. S. to our support group, if you would like to help Marvina and her family, Fran Stanford (336-292-7446) may be able to give you suggestions]. Jupy Stout, a friend and fellow-sufferer in our support group with MCS, recently underwent a double mastectomy. We’re remembering her in this time of additional pain and distress. Judy, you’re a giver, too, and we appreciate your interest and sharing with other PWC’s. EU may tighten industrial-chemical policyThe European Union today makes public a draft policy that, if passed, would create one of the world’s strictest regulatory systems for managing chemicals. Called REACH, for Registration, Evaluation and Authorization of Chemicals, it requires industrial chemical manufacturers to test their products before they are sold to determine their effects on the environment and human health. Most industrial chemicals currently in use in the USA and elsewhere were put on the market long before safety tests were required. The U.S. government has warned that the proposed rules may violate international trade agreements by restricting trade. Industry groups say the policy will cost millions and could lead to the ban of products that have been available commercially for years. - USA Today, May 7, 2003. Editor’s Note:
This editor has spoken with two separate RTP medical
researchers working for the drug and pesticide companies.
Off the record they each confirmed their research results included
neurological, immunological and messenger RNA damage at the cellular
level. One researcher only
allows his family to eat a diet of fruit/vegetables that can be peeled,
because the pesticides do not wash off, and large amounts of yogurt.
One confirmed his project was ended by the company when he found
the messenger RNA damage to the fruit fly they were studying. QUOTES“It seems the brave are always funny.” - Chris Hedges“War is a force that gives us meaning.” We are in a war - against CFIDS/ME/MCS, getting to know our enemy, finding the ways to victory. My forgetter’s getting better,
Fish oil can fight fatigue illness
Fish
oil supplements could help sufferers of ME, according to research.
Scientists investigating the mysterious condition now believe it is
triggered by a chemical imbalance in the brain. …The findings indicate
that phospholipid metabolism in the brain is abnormal in ME sufferers,
resulting in damage to nerve cells. … Research team leader Dr. Basant
Puri, from London’s Hammersmith Hospital, said: “If patients with ME
take a high-EPA fatty acid supplement, then that should have a beneficial
action on the chemical imbalances in the brain. … EPA, found in fish oil
supplements, influences the brain’s chemical balance.
Co-Cure. Correlation of immunologic parameters to psychological variables in CFS. There is a positive association between activation of the immune system (CD4/CD8 ratio) and SCL-90 Somatisation and SF36 measures of daily activities (motivational style, physical functioning and rote functioning). -E. Van Hoof, D. Coomans, R. Cluydts, K. DeMeirleir , Dept. of Human Physiology, Vrije Universiteit Brussels, Belgium. Hyperbaric oxygen therapy for chronic systemic infections in CFS. http://www.sciencedirect.com/science/journal/01678760
Tracking Brain Functions Standard MRI takes a series of “snapshots” when a person is lying still. Functional MRI(fMRI) looks at the brain “in motion” over a period of time, detecting changes in the flow of blood in different areas of the brain while the person being examined is undertaking (usually simple) actions or behaviors. “When the brain is active, blood flow increases to the area of activity,” explains Sicotte. “Blood contains heme, a magnetic material, so as blood flow increases there are changes in the magnetic field. Functional MRI looks for these changes.” In this way, scientists can have a much better sense of exactly which part of the brain might be responsible for specific behaviors or actions. Heather Wishart, PhD (Dartmouth Medical School,
Lebanon, NH) is funded by the Society to study patterns of brain activity
related to motor and cognitive function in people with mild
relapsing-remitting MS. Using functional MRI, Wishart’s group had found
that both movement and memory tests activated the brains of four people
with MS differently than individuals without MS. The results indicate that
more areas of the brain were recruited to help with given tasks, even
though they did not display obvious signs of memory or movement problems.
She is expanding these studies to 40 people and is determining
whether the brains of people with MS are activated differently to
compensate for areas of tissue damage. - Sara Silberman, NMSS Research
Highlights. CSPAN 2 All day on December 27, 2002 Congressional hearings were running about the link between Vaccinations and Autism, and there was a lot of MCS-related material, i.e., amount of mercury in many of these vaccines by addition of Thimerosol and other “preservative” adjuvants like Gulf War vets had with multiple vaccinations, i.e., squalene. The kicker here is that there are four times the “safe” level of mercury in many of these injections. The vaccines are not necessarily unsafe, but the additives to them are. One epidemiology professor who was testifying said he would not give the vaccines to his grandchild - their susceptibility is even worse - also it brought out effects of permanent brain damage, immune system damage. RhNeg moms who were given Rhogram during pregnancy with Thimerosol had high percentage of autistic children. This compound was shown to cause aptosis (cell death) or brain cells and showed pix of it occurring. CDC’s obstructionism, pharmaceutical conflict of interests links with some of the research “studies” presented. Dr. David Baskin (formerly NIH), Dr. Mark Geier (Genetic consultants of Maryland), Dr. Walter Spitzer (McGill U. Epidemiologist Emeritus) are some of the presenters. They also bring out the speech disorders resulting from this, as well as “allergies,” and say that brain-damaged patients should not be referred to psychiatrists but clinicians/neurologists for primary treatment. They said that Rome fell after advent of use of lead pipe, i.e. neurological damage/disorder, what is happening today in our society. This has, I believe, potential implications for Gulf War Vets, autistic, MCS and CFIDS and other of our fellowship of disability. They also say that no adjuvants are necessary to preserve these vaccines, just use single dose vials. This presentation was compelling. It also brought out that the cell membrane penetration by this went into the cytoplasm and into the very nucleus of the cells where the DNA is - damage here has not been heretofore studied. Implications are staggering. P.S. Check
your contact lens solution to make sure it doesn’t use
mercury-containing preservative, Themirosol.
Try Alcon Saline Solution for Sensitive Eyes;
Bausch & Lomb “Renu.” FYI: For Your Information· National Disability Council www.ncd.gov/resources/resources.html · Housing for People with Disabilities · If you are homeless… www.hud.gov/groups/disabilities.ctm Recent Research Funded by the NCF….has brought an important addition to the anesthesia protocol. Because ciguateratoxin uses the sodium channel, it is imperative that no anesthesia use the sodium channel. Ciguatera affects at the cellular level and one anesthesiologist has already successfully used a sodium channel blocker during anesthesia. · The National Forum - Spring 2003 Dry Eyes? Dacriose, no prescription necessary. Large and small bottles available. Ask pharmacy to order. Defining Chemical Injuryhttp://www.iicph.org/docs/ipph_Defining_Chemical_Injury.htm MCS in: CFIDS What It Is, What It Is Not, And How It Is Manifested http:// www.med-help.net/mcs.htm (Online MCS help provided free by doctors/nurses/extensive library of articles) Research
Ruminations “A setback is often a step back to a step
up.” - overheard. News & NotesExcerpts from AACFS 6th International Conference on CFS/FM/Related Illnesses. Dr. Yoshi Yamamoto, Educational Physiology Lab at University of Tokyo, introduced the ECOLOG Monitor Watch. This device looks like a watch and normally displays the time and date; but periodically it beeps to remind the wearer to record symptoms and to take a brief cognitive function test. Also, the device is an Actimeter that constantly monitors the activity of the wearer. After several days this data can be downloaded to a personal computer and the data utilized in standard Microsoft-based programs such as Excel. Dr.
Yamamoto’s associate, K. Yoshiuichi, MD PhD, demonstrated the utility of
this ED (electronic diary). In
a preliminary study of PWCs versus controls, Yoshiuchi has demonstrated
that PWCs are more active than controls, more fatigued, sleep less well,
and have more performance difficulties on the neurocognitive test.
Remarkably, PWCs performed more work over the course of the day
than normal counterparts, but it was accomplished in short bursts of
intense activity during the day and separated
by periods of rest. This
may have represented PWCs who tend to “push and crash,” and may not be
a healthy trend at all. -
Dr. Charles W. Lapp. CFIDS and Overlapping Disorders: Variations on Theme?Many chronic disorders share common features, including symptoms and abnormalities. Studies of illnesses such as chronic fatigue and immune dysfunction syndrome (CFIDS), fibromyalgia (FM) and irritable bowel syndrome (IBS) show that several chronic disorders often occur in the same patient. Since these illnesses are compartmentalized and labeled, each is studied as a discrete disorder. But as common factors become more apparent, the boundaries between illnesses tend to blur. Because of the number of overlapping symptoms and characteristics, there is speculation that many chronic conditions are either related or are different manifestations of the same illness, perhaps caused by similar factors. Muhammad Yunus, MD, considers CFIDS, FM, Gulf war illness (GWI), multiple chemical sensitivity (MCS) disorder and others to be part of a greater grouping that he calls central sensitivity syndrome, or CSS. - Co-Cure (Read the article at http://cfids.org/archives/2002/2002-4-article02.asp New booklet offers some hints on drug costsWASHINGTON - The Cost Containment Research Institute in Wassington has published a 48-page booklet, “Free & Low Cost Prescription Drugs.” The sixth edition booklet tells how and where to get free and low cost prescription drugs. “Many major drug companies provide free or low-cost medication, but rarely, if ever publicize the programs,” said Gary Nave, director of The Institute. “ We have published an A to Z listing of the drugs that are available through patient assistance programs, for free or at very low cost directly from the manufacturer. Consumers
can get a copy by sending $5 to Institute Fulfillment Center, Booklet
PD-65, PO Box 210, Dallas, Penn. 18612-0210. Or visit the institute’s
Internet Web site at www.institute-dc.org.
- The Time-News, Burlington, NC. Addition to Doctor Listing Dr. Erlacher,
Primary Care CFS/FMS, moved from High Point to 3641 Westgate Center,
Winston-Salem, NC 27103, 659-4646.
Homemade Insecticidal Soap, More Pest Control Solutionsby Annie Berthold-Bond, CARE2.com Producer, Green Living Channels Doug Harp, a graphic designer friend, first alerted me to soap as an effective all-purpose pesticide when he used Dr. Bronner’s Liquid Peppermit Pure-Castile Soap diluted with water to kill the gypsy moths that had infested his apple trees. We were working on a project together, and I’d get faxes updating me on his kill rate (this was back beforeEmil), which, much to his delight, was excellent! Impressed, I made a mental note to look into insecticidal soaps, which I have since done. Simple solution: Soap has been used for centuries as an all-purpose pesticide. It disrupts insects’ cell membranes, and kills pests by dehydration. The key is not to use too much soap, or you’ll also kill the vegetation near the pests. If you follow the proportions of soap to water in the Soap Spray recipe below, the vegetation should be fine. Note: Buy a liquid soap and not a detergent. Health food stores have liquid soaps, such as Dr. Bronner’s Pure-Castile Soaps. Soap Spray: 1 to 2 tablespoons liquid soap, 1 quart water. Combine ingredients in a bucket, mix, then transfer to a spray bottle as needed. All-Purpose Pesticide Soap Spray. Strong smelling roots and spices such as garlic, onions, horseradish, ginger, rhubarb leaves, cayenne and other hot peppers, are all known to repel insects. A handful of roots and spices, enough boiling water to cover Soap Spray (recipe above). Add the roots and spices to the bottom of a mason jar. Cover with the boiling water, screw on the top, and let set overnight. Strain, and add to the Soap Spray. Note that this will rot, so use it all up or freeze leftovers for another time. Variation: Garlic Spray. Use 1 to heads garlic. Deer and rabbits hate the smell of garlic. It Worked for Me
Dissolving
a teaspoonful of Ecological Formula Reagent Grade Tri-Salts in a cup of
Smart Water (available at Harris Teeter and Whole Foods) provides the same
electrolytes, without sugars and dyes, and restores strength, stamina and
concentration. Following
chemical exposure, blood acid levels can be off the scales for days.
- Triangle PWC Nicotine from Tobacco Products Resembles NicotinamideThe niacin or vitamin B3 source, nicotinamide, has a close structural analogue in nicotine, i.e., the addictive substance found in tobacco products. … Considering these striking homologies, the craving for nicotine might be due, in part, to a misplaced “hunger” for the nutrient, vitamin B3, whose absorption and utilization are probably messed up by the presence of the drug. - www.nicotinamide. Who receives the Ticket to Work? Recipients of SSI or SSDI who are 18 to 64 years of age and who have had at least one “continuing disability review” within the past 12 months will begin receiving the Tickets in North Carolina after mid-2003. South Carolinians have been receiving the Tickets for more than a year. What are the Tickets to Work? The “Tickets” are documents that a person can use to designate which provider of Employment Networks (EN) will be able to receive a percentage of the savings to Social Security if the recipient returns to work and their monthly benefit check stops. (See article online for further SSDI info). www.encms.org
- MS Connection, Spring 2003. Excerpts from Tax Tips for Individuals with a Disabilityby Hank Hoesli, CPA, BKD, LLP Individuals with a disability can find several ways to reduce their tax obligations. Here are some credits available and allowable deductions that should be considered. Each of the following should be investigated in more detail: Business impairment expenses Medical impairment expenses Tax-exempt benefits - Individuals with disabilities may receive cash benefits, which are all or partially tax exempt. Health insurance benefits paid from policies paid for in full by the taxpayer with after-tax dollars, are fully exempt. If the policy was partly paid by an employer, then the amount of the tax-exempt portion must be allocated in the ratio of the employer/employee contributions. Medical care expenses - Medical expenses paid during the tax year are deductible regardless of when the care was provided. … Special foods and vitamins can qualify as a medical expense only if prescribed by a physician to treat or alleviate a specific illness and the diet serves as an addition (a supplement) to a regular diet. Tax info for
individuals:
http://www.irs.gov/individuals · MS Connection, Spring 2003, www.nmss.org H&R Block also has tips for getting discounts
on prescription drugs. Tip
#1: Many health care companies give discounts on prescription drugs.
If you are 65 or over and have a disability, you may be eligible
for some of these programs, as long as you meet certain income and program
requirements. Health
officials estimate that almost 1 in 4 seniors covered by Medicare could
save as much as $600 a year through such programs.
www.Medicare.gov/Prescription/Home.asp.
Tip #2: Ask your doctor if you may be eligible for a
patient assistance program. Most
drug companies offer these types of programs and will require your doctor
to paply on your behalf. Tip #3: Ask your doctor or pharmacist if generic drugs (same ingredients but no brand name and often less expensive) are available. Also, check with pharmacies in your area to find out what discount programs they offer. (H&R Block has no affiliation with any of these programs and does not promote or sponsor any organization mentioned.) CFIDS ChuckleLife gets plumb interesting when the words you start to utter come out differently but are still connected in a funny way! Ex: mowing the dog and combing the yard.
☼ First Look at Genome Operating System(Business Editors/Health/Medical Writers) ANN ARBOR, Mich.--(BUSINESS WIRE)--May 14, 2003--
The germ theory of disease—a new concept at the beginning of the
20th century—inspired Dr. Frederick Novy to establish the
University of Michigan Department of Microbiology and Immunology
100 years ago. This year’s Centennial Celebra-tion honors those historic
events with two days of lectures presenting insights into today’s
revolutions in microbiology. Among
the invited speakers at the Centennial Celebration is Department
graduate Dr. Howard Urnovitz, describing “The Dynamic Genome.” Dr.
Urnovitz helps launch the Department’s second century by presenting a
new concept: that the genome contains not simply a static blueprint for
life passed from parents to children, but it also contains an operating
system that instructs the organism how to both use and adapt genomic
elements to the constant challenges of a dynamic environment. Dr. Urnovitz
demonstrates how the new concept led to a practical breakthrough that will
help protect the food supply—a surrogate marker blood test for mad cow
disease that can be performed on living animals—and potential public
health applications for understanding the role of the genome in epidemics
ranging from influenza-like pandemics to the mysteries surrounding the
Gulf War syndrome, chronic fatigue syndrome, and AIDS.
Central to the concept of a dynamic genome is the discovery that
blood born sub-cellular particles, referred to as “microvesicles,”
contain “non-blueprint” RNA. In the past it has been assumed that such
microvesicles were of foreign origin and they have been referred to as
viruses. While microvesicles are found in both healthy and diseased
animals, their RNA contents appear to be different. Dr. Urnovitz is
Co-Founder and Chief Science Officer of a private genomics company,
Chronix Biomedical, which is the first to report on a diagnostic test for
blood born non-viral RNA with its application for mad cow disease, also
known as bovine spongiform encephalopathy (BSE). Dr.
Urnovitz will be disclosing his science plan for developing the required
diagnostic products to help measure and understand the role played by the
genome in disease. The plan is based on a historical review of the last
100 years of mysterious influenza-like pandemics, including the current
SARS epidemic. Dr. Urnovitz rejects the theory of a coronavirus as being
the cause of SARS. “First, the New England Journal of Medicine study was
biased in that it studied only exposed laboratory cultures that showed
cytopathic effect. Why do transmissible factors have to kill a cell to be
part of the disease process? Why can’t pathogenic genes dysregulate
cellular functions without killing the host cell?” Next, Dr. Urnovitz
presents his analysis of the so-called SARS-related coronavirus gene
sequence recovered from cytopathic cultures. “Frankly, I do not see a
virus. I see a unique and complete rearrangement of genomic elements. For
example, when I look at what is believed to be the gene sequence coding
for the spike protein of this coronavirus, I see
a complicated gene rearrangement of a region of human chromosome 7. As I
did in our studies of Gulf War Syndrome, when I see gene rearrangements
like this, I immediately search for an associated catastrophic
environmental event that could Dr.
Urnovitz traces a correlation between nuclear and chemical weapons
deployment over the last 100 years and the associated occurrence of
flu-like pandemics. He postulates that when animals are exposed to nuclear
or chemical weapons, entirely new regulatory gene sets are expressed and
packaged into non-viral RNA regulatory microvesicles. The risk of turning
an epidemic into a pandemic is increased when the exposed animals are
migratory birds that frequent gene-swapping hot spots like Southeast
China. Dr. Urnovi tz says, “The recent sightings in eastern China and
Hong Kong of rare migratory birds—white cranes, grey cranes, and
swans—that spend significant time feeding in the
radioactive-contaminated regions of Siberia suggest that international
efforts should be focused on not only hunting for weapons of mass
destruction but also on cleaning up the ones that have already been
released into the environment.”
Siberia’s Tom and Romashka Rivers are known to be highly contaminated
with not only cesium and strontium-90, which could date from nuclear tests
performed in the 1950s and 1960s, but also with phosphorus-32, which has a
half-life of only two weeks, indicating recent contamination. Aquatic
plants in the Yenisei River have been found to be contaminated with
industrial radionucleotides, and rivers near Seversk, Siberia (where two
nuclear reactors still operate), are reported to contain fish contaminated
with radioactivity 20 times the “safe” level. All of these sites are
in the path of birds migrating to Hong Kong and Eastern China, a known
“hot spot” for influenza and other viral recombination. University of
Michigan Department of Microbiology and Immunology Professor Emeritus and
Medical Virologist William H. Murphy says, “West Nile Virus infections
are a good current example of the role played by migratory birds in the
spread of viral associated diseases.” Additionally,
major antigenic drift among influenza viruses (H1N1 to H2N2 to H3N2 from
1918 to 1969) can be temporally mapped to above-ground nuclear testing in
the flight paths of migratory birds across Siberia to Eastern China. From
his historical review of the data, Dr. Urnovitz proposes the following
list of catastrophic events and associated epidemics: · Chemical weapons deployment in WWI and the worldwide 1918 Spanish flu H1N1 pandemic, as well as isolated smallpox outbreaks. These include a breakthrough smallpox epidemic in 1918-1920 in a smallpox-vaccinated Philippine population; · Above ground megaton nuclear weapons testing in the South Pacific in the 1950s and the H2N2 flu pandemic; · 1950s and ‘60s widespread pesticide use (e.g., DDT) and the childhood paralysis and chronic fatigue syndrome epidemics; · Chemical weapons use in Vietnam along with China’s and France’s above ground nuclear weapons testing and the 1968 through the 1970s H3N2 influenza pandemics; · Hepatitis B vaccines contaminated with regulatory genetic elements and the emergence of AIDS in the US in the late 1970s-early 1980s; · Widespread pesticide use in Africa in the 1970s to present and AIDS; · and Multiple toxic exposures simultaneously with multiple vaccine administration in 1990 and Gulf War Syndrome. Dr. Urnovitz also highlights supporting evidence rejecting the single-gene theory of mysterious epidemics. “While the current dogma states that vaccines stop viral epidemics, the historical data do not support that claim. From smallpox to polio to HIV, all vaccine attempts have been ineffective or hazardous to the vaccinee. Therefore, Chronix Biomedical’s product development plan takes a different approach from the single-gene model of viral infections and associated vaccine therapeutic efforts and the company intends to develop screening and diagnostic tests based on the detection of non-viral RNA regulatory microvesicles for both veterinary and human diseases.” The first diagnostic application of the non-viral RNA microvesicle discovery is a living blood test for mad cow disease or BSE. The BSE blood test—the first that can be performed on living animals—is under development in the laboratory of Professor Bertram Brenig, Director of the Institute of Veterinary Medicine, Georg-August University, Gottingen, Germany. Dr. Urnovitz’s collaboration with Dr. Brenig’s laboratory has resulted in detection of a specific RNA unique to cows at risk for developing or that have confirmed cases of BSE. The Chronix BSE blood test is anticipated to be the first licensed test that can be performed on living animals. Chronix expects to apply for governmental approval for this test during this calendar year. Current BSE tests can only be performed post-mortem on cow brain material. The post-mortem tests look for an abnormal protein known as a prion that is associated with the disease. The BSE blood test is considered a surrogate marker test since it detects blood RNA, not prion proteins. Dr. Urnovitz’s talk in Ann Arbor presents results that show that the BSE blood test is 100% sensitive on all 6 BSE cows confirmed with a licensed prion test. The BSE blood test is 100% specific on all 46 animals from known healthy herds. The intriguing part of the study is that 3.5% of cohort animals (two animals out of 57) showed a positive response in the surrogate marker living BSE blood test. Cohorts are defined as all animals born and/or raised in the same herd as a confirmed BSE case within approximately 12 months before and after the date of birth of the BSE case. Positive cohort cases may represent animals at risk for developing BSE. The current European Union regulations require all cohort animals to be slaughtered. Chronix Biomedical, founded in 1997, is a privately-held genomics company that is developing products that address chronic diseases for both human and veterinary markets with offices in San Jose, Calif., and Gottingen, Germany. The Company’s
core technology is the detection of acellular nucleic acid sequences in
serum, plasma, and other biological fluids of diseased individuals or
animals. The Company’s mission is to focus the power of genomics on
creating technologies to diagnose, monitor, manage, and treat chronic
diseases.
-Co-Cure Neurologist writes about ME in Western Mail (Cardiff)In response to a request from WAMES, this is a letter that I have just sent to the Western Mail regarding some controversial comments that have recently been made about ME by a local neurologist. Editor - In his letter (dated 21 April) Dr Trevor Pickersgill says that the Chief Medical Officer’s report did not conclude that ME (myalgic encephalopathy/encephalomyelitis) was a neurological disease. As a member of the Working Group that prepared this report could I point out that we are not asked to come to any conclusions about precise causation as this is a multisystem illness where abnormalities have been reported in various body systems (brain, hormonal and immunological in particular). Our report was principally concerned with the diagnostic assessment and management of these patients. As far as classification is concerned, the World Health Organisation does now include ME as a neurological disorder in section G93.3 of ICD10 (International Classification of Diseases, number 10) as do many neurologist colleagues of mine. And contrary to what Dr Pickersgill had to say about no abnormalities being found with complex neurological investigations, significant abnormalities in brain function have been published in the scientific literature, in particular in a key area known as the brain stem (reference: Brainstem perfusion is impaired in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Quarterly Journal of Medicine, 1995, 88, 767-783). When it comes to treatment, my experience is that drugs such as paracetamol are seldom adequate for the type of pain which some people with ME experience, and the CMO report gave cautious recommendation to other types of drugs which are used in the management of neurological pain (eg gabapentin/Neurontin). Dr Pickersgill also recommends graded exercise therapy (GET) - a controversial form of treatment whereby patients are encouraged to increase their activity levels even though this may be exacerbating their symptoms. However, feedback from ME patients in the CMO report indicated that around 50% found that GET had actually made them feel worse. So most doctors prefer to recommend an approach known as pacing where increases in activity are much more gradual and flexible. Yours sincerely, Dr Charles Shepherd · Co-Cure |