University of Glasgow: Dr John Gow's research into ME hit by cash crisis

Further to the previous post below, here is a copy of a report at the Glasgow Evening Times today:

DR JOHN GOW is leading the ground-breaking research on the illness ME at Glasgow University

PIONEERING research by Glasgow scientists which could lead to a cure for ME is under threat from a lack of funding.

A team at Glasgow University has made a genetic discovery which could change the lives of patients with the debilitating condition.

But the ground-breaking work - which is a year from completion - will halt within weeks unless extra cash is found.

Dr John Gow, leading the research, said: "As it stands I will not be able to continue my research beyond the end of May.

"I face having to let my research assistant go by then, which means the team will be broken up and momentum with the research will be lost.

"It would be a great loss for the university and for ME patients."

His plight has been taken up by Alex Fergusson, Tory MSP for Galloway.

Mr Fergusson said: "It's entirely unacceptable that the Executive seems prepared to see this grind to a halt, when we may be just a year away from a life-changing diagnostic test and cure for ME."

Dr Gow believes ME is caused by a gene malfunction which prompts the immune system to "work overtime", making patients excessively tired.

He says a cocktail of drugs could be used to switch off the defective genes, allowing patients to lead normal lives.

The drugs have still to be tested but Dr Gow believes his research is a big step forward.

He is waiting to hear about an application for an additional grant.

Dr Neil Abbot, of ME charity Merge, said Dr Gow's work was "absolutely crucial" and called for more funding for it.

Dr Gow's funding comes from the Executive via Scottish Enterprise.

A Scottish Enterprise spokeswoman said: "This could be an exciting opportunity for Scotland and in 2003 we offered an award to Glasgow University to develop this technology further.

"The project is at an interesting stage of its development and we continue to work with Glasgow University to try to help it achieve a commercial outcome."

TIMESFILE

- ME (Myalgic Encephalopathy) is also known as Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome and Yuppie Flu.

- Symptoms include extreme tiredness, muscle pain, sensitivity to noise and light, severe headaches, digestive problems and disturbed sleep patterns.

- ME is notoriously difficult to diagnose. Doctors arrive at a diagnosis by a process of elimination, which can take up to six months.

- ME can last for anything between a few months and many years.

- As no cure exists, treatment involves managing the condition by finding a balance between activity and rest.

- For years it was debated whether ME was really an illness. It finally gained full medical acceptance in 2002.

http://www.eveningtimes.co.uk/print/news/5039240.shtml

University of Glasgow: Scientists find key to curing debilitating ME?

Not sure what to make of this, but it sounds interesting so I am copying it here for future reference.

A report from HindustanTimes.com entitled "Scientists find key to curing debilitating ME":

London, May 24, 2005

A remedy for the debilitating condition ME, which causes extreme fatigue in patients, could be available in as little as a year after groundbreaking research.

A Glasgow University team has discovered the malfunction in sufferers' genes, which appears to prompt their immune system to "work overtime", making them extremely tired, reports the Scottish daily Scotsman.

The lead scientist, John Gow, said a cocktail of drugs could be used to "turn off" the genes - that cause the condition also known as chronic fatigue syndrome (CFS), once derided as "yuppie flu", allowing patients to live "a fairly normal" life.

The university has already patented the genes involved. It took a while to realise the gravity of the disease.

In 2002, Liam Donaldson, the chief medical officer for England and Wales, said "CFS/ME should be classed alongside other diseases such as multiple sclerosis and motor neurone disease".

Gow, a senior lecturer in clinical neuroscience at the university, mapped all 33,000 genes in CFS sufferers and compared them with the genes of healthy people. He said they found CFS sufferers had a particular kind of "unusual gene expression".

"This means the genes are switched on or off at an inappropriate time. We have identified a number of genes that are wrongly switched on," he said.

"It looks like the immune system is working overtime when it shouldn't be, making the patient tired."

Every cell in the body contains the same 33,000 genes, but only about 10 per cent are actually doing anything at any one time. There are genes related to the production of liver proteins in brain cells, for example, but these should be "switched off" because liver protein is not required in the brain.

Drugs can be used to control chemical pathways that act on the genes and Gow said he had identified ones that could be used to regulate the over-active genes in CFS.

These drugs are already on the market for other conditions and could be given to CFS sufferers within a year if tests prove positive. "This is not a major breakthrough yet, but it is a big step forward," he said.

A prototype diagnostic testing kit has already been developed, which would give doctors "a yes or no answer" about whether someone had the condition. Currently it takes about six months to make a diagnosis.

http://www.hindustantimes.com/news/181_1373779,0050.htm

ME/CFS/PVFS - An exploration of the key clinical issues

A booklet prepared for health professionals by

Dr Charles Shepherd MB BS
and
Dr Abhijit Chaudhuri DM MD MRCP
Clinical Senior Lecturer in Neurology
Consultant Neurologist
Institute of Neurological Sciences
University of Glasgow

Contents:

Introduction
Nomenclature
Research Based Definitions
Epidemiology
Pathoaetiology
Diagnostic Assessment
Management
Prognosis
Severely Affected Patients
Children and Adolescents
Information for Patients
References

The booklet is available here in pdf format.

Printed copies are available for health professionals. Please contact ME Association Head Office for details.
- - -

Also click into ME Association sidebar for:

CMO Report on CFS/ME
Symptoms and Diagnosis
Prognosis
Treatments
Research

CDC Begins Study of Chronic Fatigue Syndrome in Georgia

The CDC is an important organisation in America, sort of equivalent to our Medical Research Council here in the UK. Well, not really. I'm not sure that we have the equivalent of the CDC.

Here is an encouraging report about CDC research, though it looks likely that once again, the severely affected sufferers will not be included. They won't be up to the interviews and tests, unless they are visited at home which is hard to imagine.

Surely the severely affected are a good key to finding out more about this illness because the symptoms are so pronounced and the same for every sufferer, across the board. When I speak to severely affected sufferers over the phone, I can recognise the illness in their voices - it's difficult to describe, but you can hear their voices wane and sense the brain fog that descends after a certain amount of time talking.

Here is the report, that I am logging here as a reminder to follow up on the results at a later date.

ATLANTA, April 25 /U.S. Newswire/ -- The Centers for Disease Control and Prevention (CDC) recently launched a study of chronic fatigue syndrome (CFS) and related illnesses in 14 metropolitan, urban and rural areas in Georgia. The study is designed to gather information about key features of the little-understood illness and the number of people it affects in specific population groups.

First identified in the 1980s, CFS is characterized by a severe and debilitating fatigue that does not improve with rest. Its cause is unknown, and the illness is difficult to diagnose. An estimated 800,000 people in the United States have CFS or similar illnesses, and minorities and people with lower incomes appear to be affected more often than others.

The study in Georgia is intended to help researchers better understand the risks for CFS among different population groups, according to Dr. William Reeves, CDC's lead CFS researcher.

"Georgia is an ideal environment in which to conduct this type of study, because its population is so ethnically and socially diverse," said Reeves. "The major goals of the study are to help us better understand the illness and its symptoms, and to provide CDC and collaborating researchers with information that will lead to improved treatment of CFS and possibly even a cure."

As a part of the study, CDC has contracted with Abt Associates Inc. of Chicago, to conduct a telephone survey of 17,000 randomly selected Georgia households. Interviewers begin by asking several questions to identify household members who may have CFS or similar illnesses. All household members who identify symptoms consistent with CFS (about 5,000) and similar numbers of unwell and well people identified during the interviews will complete more detailed interviews. Those who appear to have CFS, based on the detailed interview will be offered clinical evaluations (about 500) as will approximately 600 unwell and well people who were interviewed. Clinical evaluation will include a free medical and laboratory examination. These participants will be paid for their time and given the results of their laboratory tests.

When the study ends this spring, researchers expect that more than 7,000 people will have completed the telephone survey and more than 700 of these respondents will have visited study-site clinics in Atlanta and Macon, Ga.

The study will help provide a picture of how many people may be affected by CFS and similar illnesses in the study area and will allow CDC to estimate the burden imposed by CFS in Georgia and across the United States. To help ensure that the study evaluates a diverse cross-section of the state's population, Abt Associates has randomly selected households from 14 areas, of which two are major metropolitan areas (DeKalb and Fulton counties), two are urban (Bibb County, including the City of Macon and the City of Warner Robins in Houston County), and 10 are rural (Baldwin, Bleckley, Crawford, Houston (except Warner Robins), Jones, Macon, Monroe, Peach, Twiggs, and Wilkinson counties). Participation in all aspects of the study, including the telephone screening, is voluntary.

CDC first became involved in CFS research two decades ago, when it investigated an outbreak of an unknown illness characterized by debilitating fatigue among residents of Incline Village, Nevada. Since 1988, CDC has conducted a series of studies describing the clinical features of CFS, identifying risk factors and diagnostic markers, and estimating the prevalence and incidence of CFS in the United States. Although the cause of CFS remains unknown, the research program has helped to increase knowledge about CFS and other fatiguing illnesses.

http://www.usnewswire.com/

Research: Green Tea Extract and Catechin Ameliorate Chronic Fatigue-Induced Oxidative Stress in Mice

Report via ImmuneSupport.com 05-09-2005

J Med Food. 2005 Spring;8(1):47-52.
Green tea extract and catechin ameliorate chronic fatigue-induced oxidative stress in mice

Singal A, Kaur S, Tirkey N, Chopra K.

Pharmacology Division, University Institute of Pharmaceutical Sciences, Panjab University, Chandigarh, India.

Chronic fatigue syndrome (CFS) is an illness characterized by persistent and relapsing fatigue, often accompanied by numerous symptoms involving various body systems. The etiology of CFS remains unclear, but a number of studies have shown that oxidative stress may be involved in its pathogenesis.

The present study was designed to investigate the protective effect of green tea extract (GTE) and catechin in the mouse model of CFS. Animals were subjected to a forced swimming test session of 6 minutes every day for 7 days; a significant increase in immobility time on successive days represented the CFS in mice. Biochemical analysis revealed that the chronic swim test significantly increased lipid peroxidation levels and decreased glutathione levels in mouse whole-brain homogenate.

Treatment with GTE (25 or 50 mg/kg, i.p.) and catechin (50 or 100 mg/kg, i.p.) for 7 days reversed the increase in immobility time.

Protection was correlated with the lowered levels of lipid peroxidation and restoration of reduced glutathione levels in the brains of fatigued mice. These findings strongly suggest the pivotal role of oxidative stress in the pathophysiology of CFS and that GTE and catechin could be used as potential agents in the management of CFS and warrant the inclusion of GTE and catechin in the treatment regimen of CFS patients.

PMID: 15857209 [PubMed - in process]

We all need sunlight for vitamin D

This was supposed to be a quick post but my concentration is poor so its turned into a long post. Brain starting to get foggy. Hard to think succinctly and to the point. Eyes are burning, gums throbbing. Feel like I have been awake for days on end without rest. It's difficult to believe there is another person on the planet who feels the way I do at the moment. Who would ever believe that intense fatique can make you feel like on deaths door without the energy to even make a phone call and talk.

Lately, I have even been having trouble laying propped up on the couch. Do not have enough energy to do that. Muscles burning. Neck burning. Shoulders and back burning. Feel need to be flat. But I refuse to give in until I can't bear it any longer. I've not experienced this before. I've always been able to manage propped up against four big pillows.

Still not been past my front gate since March 2003. Cannot recall sitting out in the sun over the past year. Felt too ill. Imagine you are suffering the peak of flu where sights, scents and sounds make you feel worse, muscles ache, throat hurts and sunlight burns so brightly the light and heat and even wind exacerbate the symptoms. That is how I feel on most "good" days.

I've heard we all need a certain amount of sunlight to process vitamins within our bodies. Most people get enough just through their daily comings and goings to and fro outside. Starting June, I have a plan for aiming to sit outside, no matter what, every day, weather permitting, but am not sure how long is needed in order to reap the benefit. Somewhere, it was written 15 minutes a day. I am on the brink of ordering two lightweight lounger deck chairs via mail order - one for the front and one for the back courtyard, so depending on how I feel (there's more walking and effort involved getting to the front balcony) I can wrap up warm and lay outside for a short while, even on cool weather days, to get some fresh air. I do open the window in front of me every morning and get a blast of air for fifteen minutes, even in winter time. Some days, the sun is strong enough to reach in through the window onto my face here on the couch.

The loungers are lighweight enough that if a storm blows, I can bring them in. The fabric is special. It is roped to the non-rust frame (important here by the sea as the salt air rusts things quickly) and because it is a fine mesh, rain will drain through and it can easily be hosed down if it gets dusty. No need for carrying hefty lounge cushions to and fro when weather gets bad. They fold away easily, don't pinch fingers, are slim and compact, and have a holder for a sunshade parasol that comes in navy blue to match the chair. Of course the perfect lounger comes at a price. They are £125 each. But, buy cheap and you buy twice. And the less expensive ones are bulkier and heavier to handle and need cushions. Someone gave me a lounger a few years ago - you can't lay reclined, it's too upright, cushion is heavy and bulky. You can't leave it outside overnight incase it gets damp, so it has ended up wasting space in the attic.

The new lounger, if my health improves, will easily pack away in a car, so if I visit friends or go outings there will be some sort of instant lounger/chair for me to pace myself on without having to take up someone else's couch or be anti social and lay on the floor :-)

Yes, I do have my dreams that one day I will go out. The loungers are good looking, nice seasidey pale blue fabric with built in head rest and real wood arm rests. They change into three positions - almost flat out, half flat and almost upright turning into a chair. Because they do so many jobs, I think they are worth the money.

Besides, when anyone visits, it means they (or we) can lay or sit outside with parasols to shade eyes from sunglight (and passers by below). The few times I have been on the balcony, holidaymakers pass by, look up wistfully and make some friendly comment about my life of leisure and great vista ("Some have it nice eh? Can we come up and join you?.... etc.)

Wearing sunglasses makes you look less ill. The eyes are a dead give away. So the next thing on my list of things to do is to get a good pair of sunglasses where the light does not shine in through the sides. I saw a great pair of wrap arounds, that did not really look like wrap arounds, in a Ralph Lauren catalogue. Tried to order them from the London shop over the phone, even called New York, but they were out of stock.

How to buy sunglasses without trying them on. Maybe I can send the catalogue to my optician. He goes on buying trips all the time to get a wide variety of frames from Paris, Milan etc., and might be able to find something similar. The beauty of that particular pair, I could tell, was they were a universal one size fits all, didn't matter if they were too big or small - they'd suit anyone. No need to try them on first. If the lenses are not too large, they could be fitted with prescription lenses so I can see what's going on out at sea more clearly. Plus, I could wear them here indoors during the summer when the sun shines so brightly in here I have to squint to see my laptop screen.

It's four o'clock now, I shall post this and phone the mail order company to order the loungers so at least I have accomplished something towards my plan for recovery.

Today, I found a report on the amount of sunlight we need. Here is an excerpt:

For individuals with skin phototype II (which includes fairer-skinned individuals that tend to burn easily from unprotected sun exposure), five minutes of noontime summer sun exposure two-to-three times per week is more than adequate to satisfy the body's requirement for vitamin D. The study suggests that this level of sun exposure was easily achieved through incidental exposure.

SOURCE: American Academy of Dermatology
Web Site: http://www.aad.org http://www.skincarephysicians.com
via http://www.prohealthnetwork.com/library/bulletinarticle.cfm?ID=2500

UPDATE: I have ordered the two loungers using the money my mother sent me for my birthday which does not make me feel guilty for splurging. She will be pleased that the money has been put to good use. I've also ordered two cheery looking Italian travel rugs that are lightweight and machine washable. Pale blue and dark lilac checks, with dark blue lines - look real cheery and seasidey and go well with the sky blue loungers. On hot summer evenings, I can sit out on the balcony when the air gets too close in here. My cat Ophelia won't recognise what's going on when she sees me out in her territory during the day and at night. She'll love it.

Silent Tragedy of 800,000 Victims -- The Invisible Hostages.

Here is a copy of a report via ImmuneSupport.com 05-04-2005 entitled "The Nightingale Sings: About CFS/ME Advocacy" by John Herd:

One afternoon, I heard something about the nightingale that inspired me to want to write an article about advocacy. But first I wanted to create a picture of a bird flying so I went to the Internet for ideas. My Google search for a bird on wing lead me to the logo of the Shepard Symposium on Social Justice.

Seeing the words "social justice" really ignited my curiosity because social justice is so much of what our ME/CFS advocacy is all about - getting those afflicted with ME/CFS the resources and health care they need, getting enough physiologic research conducted to find a cause and effective treatments, and teaching the public about the truths of the illness.

I sent a request for more information to the symposium organizers, along with an article I'd written about ME/CFS so they'd understand why I was interested. The name of that article was, "Silent Tragedy of 800,000 Victims -- The Invisible Hostages." Much to my surprise I received an invitation to submit the article and to come speak at their upcoming national conference.

Clearly this was an opportunity to get our message out to a receptive and very different segment of the public. There was a problem though - I couldn't afford to go and sent out a call for assistance. What came next was a shock to me. Though some of our leading organizations remained silent, patients and a number of ME/CFS organizations began offering to help. In light of the apparent loss of national advocacy momentum, leadership and little cooperative interaction amongst many of our organizations I did not expect this.

Pat Fero, president of the Wisconsin CFS Association lead the way with assistance on gathering needed ME/CFS information, a very generous donation, contacting other groups about possible contributions and booking reservations. She was the apex of what made it possible for me to speak on behalf of all patients. The New Jersey CFS soon followed, also with a generous contribution. Then ProHealth (ImmuneSupport.com), Marla McKibben of PANDORA in Florida and two patients did the same.

Christine Hunter of the Alison Hunter Memorial Foundation in Australia provides an excellent video tape about ME/CFS and the horrific impact on adolescents for the conference. And both Alison Petty from Brainfog.org and Corina Duyn, a very inspirational artist from Ireland, provide pictures for use in my presentation.

There was one more hurdle to get over though. I had to be able to get my PowerPoint slide presentation to Wyoming where the conference was taking place. The HHV-6 Foundation loaned me a notebook computer as well as providing instruction on how to use it. And last but by no means least, Claudia from the CFS/FM Association of Georgia made me two back-up CDs of the presentation just incase all else failed.

What transpired is exemplary of ME/CFS advocacy at its best. It was more than people helping people. It was participative solidarity -- cooperation making the sum far greater than its individual parts. Though the voice speaking in Wyoming may have been mine, the message behind the voice belonged to all those who helped me and all those afflicted with ME/CFS.

When we speak about the illness, as soon as the name CFS is mentioned we run head on into people's preconceptions, negative biases. For the presentation I tried doing an end run around the preconception and bias problem.

Before mentioning the name of illness I provided medical information of quantified physiology, descriptions of how ill people are and other very human aspects of patients' experiences. Clearly from people's expressions the message was having an impact. It was only then, half way through the presentation, that I mentioned the name CFS. Feedback after the presentation was very encouraging. People made comments like, "I didn't realize that..." and then shared their misconceptions with me. Their views of CFS and those afflicted had been changed. It convinced me the public, even those who are skeptical about the severity of the illness, will be receptive to the message if it is conveyed effectively.

Part of that effectiveness is taking the gloves off -- hitting them with not just solid medical information but the hard to hear personal stories of human suffering. And that too worked in the presentation. Throughout the rest of the conference people came up to me saying things about how powerful the presentation was. Next time they meet someone who has ME/CFS they will probably have a very different reaction than if they had not heard the presentation.

Now back to the nightingale. Supposedly, if a baby nightingale is raised in seclusion, away from other nightingales it will never sing. But if it is later reunited with other nightingales it will begin singing as if it had been singing all of its life. That to me is a perfect metaphor for what our advocacy and support efforts are meant to be about -- what they are about on a grassroots level. We come together and learn from one another. We learn information that may help us get better treatment. We learn to advocate for ourselves and for the illness. And possibly most important, we find ways to embrace the sweetness in life despite our tremendous hardships. Somehow we need to harmonize all our voices into a broad national choir.

During the presentation one person appeared particularly attentive to what I was saying. It turned out she has had ME/CFS much of her life and had to cope with what resources she had. She had never met another person who has ME/CFS and never connected with on-line ME/CFS information resources or organizations.

Despite there likely being over 8,000 people afflicted with ME/CFS in Wyoming, there are no ME/CFS support groups there to direct people to information or medical resources. It's clear our organizations, the health department and the medical community have failed to get needed information to those who most desperately need it. There could be over 600,000 people in the US alone who have not reaped the benefits of up to date ME/CFS medical information, understanding support or adequate medical care. Given that the CDC has found in its studies that 85% of those afflicted have not even been previously diagnosed, the untold stories of those who have similarly suffered on their own is a tragedy of cataclysmic proportion.

When I returned home from Wyoming I received a letter from the woman. She wrote, "I don't think I let you know how much your presentation meant to me. I cried hard all the way home. It's as if I was suddenly freed from a cage." She later added that she was starting to think very differently about herself and how she copes with various aspects of having the illness.

The nightingale sings!

Copyright John Herd, 2005, all rights reserved. Author's email: johnherd@earthlink.net

National Fibromyalgia Association Founder Says She's Heard About 'Cures' Before

This report I find useful in relation to ME/CFIDS because it states FMS is a neurochemical disease (which I feel is an area researchers should explore in ME/CFIDS sufferers). Excerpt:

"Fibromyalgia, Yunus said, is a neurochemical disease - a chemical imbalance causing hypersensitivity in the nervous system that amplifies pain. Trauma to the neck can trigger fibromyalgia, but so can stress, genetics, poor sleep and infection, Yunus said."

It is interesting that the spine should be mentioned in the report. In 1980 I was quite seriously injured in a car accident and suffered whiplash that took years to heal. One of the bones in my spine close to my neck [c-3 or something] was injured and squashed. I spent three weeks in hospital because of a head injury and six months of physiotherapy to rebuild torn back muscles. On a brain scan, a small lesion showed up. The neurologist said the head injury could have caused the lesion or it might be congenital. He said he had seen similar lesions in M.S. sufferers and was looking for M.S. I was young, fit and healthy, and had no other complaints except for the injuries.

Now I wonder, not that I have M.S. but I have read that M.E. can show up on scans as white lesions - tiny specks, much smaller than those of M.S; some are too deep in the brain to show up on scans which could explain why scans show up clear on some M.E. patients, making scans not a very reliable diagnostic marker for M.E. Who knows, one day, I might have a PET scan. I am still too ill to attend for such a test. It would have to take place during a hospital stay. What is the point though I ask myself. Even if they did find something, it wouldn't change anything, there would be no treatment or cure. I did have a life and career after the car accident, but have never felt quite the same since. Always struggled with fatigue and spent many a weekend sleeping after a long hard week of working, but I managed OK. So, if the lesion has anything to do with how I feel today, it has taken a long time to get to this point. My theory is, the virus I contracted in September/October 1999 was the final straw that did some sort of damage I have not yet recovered from. Some people do recover. The younger you are, the more chance there is for recovery within the first few years, or even four years.

Going by various studies that have been carried out over the past few decades, chances for recovery seem less after four years, although I have heard (but not first hand) of people recovering after 8 or even 16 years. I know many who have been ill for a very long time. Most of the doctors and nurses that contracted M.E. while working at the Royal Free Hospital in London (back in the 50's I think) who are still alive, are still as ill to this day. Someone locally that I know, through telephone conversations, has suffered for 17 years and is now at her wits end. Her doctor is getting her to experiment with Opium patches, which are turning out not be of much help. Some days she thinks they help, and other days she is well aware they don't help at all. Overall, she feels drugged which affects her sleep and does not add to her quality of life at all.

Dr Betty Dowsett, a colleague of the late Dr Melvin Ramsay [a British doctor who defined M.E. some 50 years ago] still to this day stands by Dr Ramsay's findings that M.E. is "atypical polio - or non-paralytic polio" caused by an enterovirus that (now I've forgotten the details) can be traced somehow in the base of the spine - please do not quote me on this - I am too exhausted right now to look up precise details. What I am saying is, it seems to me, the area of the body that should be looked is the spine and the brain - and find damage the virus has done there that could cause orthostatic intolerance and intolerence to stress and alcohol.

Here is the report, courtesy ImmuneSupport.com 05-04-2005 - 'C' Word Raises Red Flags: National Fibromyalgia Association Founder Says She's Heard About 'Cures' Before By Gregory Crofton Tahoe Daily Tribune:

Paul Whitcomb, a South Lake Tahoe chiropractor, believes he has found a cure for fibromyalgia, a disease that hypersensitizes the nervous system and causes debilitating pain in millions of Americans, most of whom are women.

He says his repeated neck adjustments realign the top vertebra of the spine and allow 95 percent of his fibromyalgia patients to get well. Experts on the illness and its leading researcher in the country are skeptical of this claim. They did not dismiss it altogether, but say controlled studies would be needed to prove it.

"When I hear this red flags go up all over the place," said Lynne Matallana, president of the National Fibromyalgia Association. "You start using the 'c' word and I get very nervous. As far as we know there isn't a cure yet."

Matallana, who was in bed for more than two years because of fibromyalgia, said Whitcomb's theory is interesting because as many as 60 percent of people diagnosed with fibromyalgia have experienced some type of physical trauma, such as a car accident that induces whiplash.

"We have ideas, but we have a lot to learn," Matallana said. "I know a lot people with fibromyalgia who have pain in the neck and shoulder area. It's an area that we think needs more research. Anecdotally, from the patients' point of view, there seems to be something there."

Leading expert

Dr. Muhammad Yunus, a rheumatologist and professor of medicine at the University of Illinois, who has studied fibromyalgia since 1980 and is a leading expert in the field, said there is a chiropractor near his Peoria office that claims similar success in treating the disease.

Fibromyalgia, Yunus said, is a neurochemical disease - a chemical imbalance causing hypersensitivity in the nervous system that amplifies pain. Trauma to the neck can trigger fibromyalgia, but so can stress, genetics, poor sleep and infection, Yunus said.

"It's very easy to have the testimony of one person, but one person does not represent the total population," Yunus said. "I think the thing you should really emphasize is that anybody can make claims, and the patients may indeed feel better, but there should be controlled studies."

Patients become believers

Whitcomb's waiting room is small and packed with sick women and an occasional man who are starting to feel better. Since his treatment can last for several months, and involve neck adjustments up to three times a day, the group bonds and empathize with each other's symptoms.

"It's so wonderful to meet other people who understood what you're going through," said Jannie Hills, 52, of Bradenton, Fla.

The empathy that fibromyalgia patients find at Whitcomb's office after years of isolation caused by their illness could contribute to a placebo effect, Yunus said. That would mean people are getting well because they think they are being treated correctly.

"I'm glad to hear about that doctor, that he's doing good things for people," said Rae Marie Gleason, executive director of the National Fibromyalgia Research Association. "But remember these people have gone to so many doctors who told them they are crazy and that if they wanted to get well they could get well. So if they find a doctor who understands their problem and reassures them he can get them better, they believe the doctor."

Gleason said she knows of other chiropractors and physicians in the country who claim to provide relief from fibromyalgia through vitamin therapy or neck adjustments.

Husbands and doctors

Bill Cornwell, whose wife, Betty, was treated by Whitcomb, rejects the notion that the improvement in his wife's health is all in her head.

"I know what I see," said Cornwell, who lives in Ohio and took out a loan to pay for Betty's treatment. "She's been able to do a lot more, she's got lot more stamina, she's not in pain and she's sleeping now. A lot of good things happened and it only changed because she went there."

Dr. Adnan Sammour, an internal medicine physician who treats Hills, knows how much pain his patient was in before she left to be treated by Whitcomb.

"She's almost completely pain-free, sleeping through the night and not requiring any pain medication," Sammour said. "She tried pain medicine, physical therapy, message, acupuncture, and that did not help. His manipulation I'm not familiar with, so it's hard to judge what's being done. But it works."

Other chiropractors work on fibro, too

Mary Glass, a chiropractor in South Lake Tahoe, said she can provide relief for fibromyalgia patients through adjustments of the spine, but her treatment also requires dietary changes and exercise.

"I see that in all my fibromyalgia patients, some kind of trauma, a fall or head injury," Glass said. "I don't believe that's the only thing. I've seen through my own experience since 1986 that fibromyalgia is an accumulation of different faults. I think if you just do that adjustment and don't address other factors, it's going to return."

The American Chiropractic Association said the research it's compiling does show fibromyalgia can be treated through their profession.

"Of the scientific papers published in the last five years definitely some are supportive of the chiropractic treatment of this disease," said Angela Kargus, communications manager for the association. "Studies have shown that treating it is really within the realm of chiropractics."

Source: http://www.tahoedailytribune.com. © Copyright 2005 tahoedailytribune.com

Ginkgo Biloba Helps Slow Cognitive Decline in MS Sufferers

Courtesy ProHealthNetwork.com 05-09-2005:

People suffering from the disabling disease multiple sclerosis (MS) could help slow the rate of cognitive decline by taking the popular herbal supplement Ginkgo biloba, according to research published last week.

Ginkgo biloba is already used by many to boost mental awareness, and previous studies had also showed its effectiveness in slowing mental decline among Alzheimer's patients, but until now the herb has not been scientifically studied in patients with MS.

The study, which was conducted by Jody Corey-Bloom, professor of neurosciences, University of California, San Diego (UCSD) School of Medicine, was presented at the annual meeting of the American Academy of Neurology in Denver last week.

In a six-month double-blind, placebo-controlled pilot study of 23 individuals with mild multiple sclerosis, physicians noted better performance on neuropsychological tests by patients who took Ginkgo biloba compared to those who took the inactive placebo.

Many MS sufferers experience cognitive problems, usually with concentration, memory and abstract reasoning. In some individuals, symptoms of cognitive decline can occur early in the disease, even when other MS symptoms, such as loss of balance and muscle co-ordination, are mild.

The researchers concluded that Ginkgo biloba, in doses of 240 mg a day, is well-tolerated and may show a beneficial effect on attention, memory and functioning in patients with mild MS. While the results were encouraging, however, Corey-Bloom stressed that they were only preliminary, and that more long-term studies were needed to confirm the positive results.

Source: UC San Diego School of Medicine