Thursday, January 20, 2005

Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome

The following is a copy of a report at 01-19-2005:

Research: Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome

Clin Diagn Lab Immunol. 2005 Jan;12(1):52-5. Natelson BH, Weaver SA, Tseng CL, Ottenweller JE.

Fatigue Research Center (129), VA Medical Center, 385 Tremont Ave., East Orange, NJ 07018.

Arguments exist as to the cause of chronic fatigue syndrome (CFS). Some think that it is an example of symptom amplification indicative of functional or psychogenic illness, while our group thinks that some CFS patients may have brain dysfunction. To further pursue our encephalopathy hypothesis, we did spinal taps on 31 women and 13 men fulfilling the 1994 case definition for CFS and on 8 women and 5 men serving as healthy controls. Our outcome measures were white blood cell count, protein concentration in spinal fluid, and cytokines detectable in spinal fluid.

We found that significantly more CFS patients had elevations in either protein levels or number of cells than healthy controls (30 versus 0%), and 13 CFS patients had protein levels and cell numbers that were higher than laboratory norms; patients with abnormal fluid had a lower rate of having comorbid depression than those with normal fluid.

In addition, of the 11 cytokines detectable in spinal fluid, (i) levels of granulocyte-macrophage colony-stimulating factor were lower in patients than controls, (ii) levels of interleukin-8 (IL-8) were higher in patients with sudden, influenza-like onset than in patients with gradual onset or in controls, and (iii) IL-10 levels were higher in the patients with abnormal spinal fluids than in those with normal fluid or controls. The results support two hypotheses: that some CFS patients have a neurological abnormality that may contribute to the clinical picture of the illness and that immune dysregulation within the central nervous system may be involved in this process.

PMID: 15642984 [PubMed - in process]

Wednesday, January 19, 2005

Hepatitis B vaccinations - Dr Shepherd writes to the BMJ - Hepatitis B vaccination and multiple sclerosis (and ME/CFS)

The following article was posted 4th October 2004 at the website of the M.E. Association:

As indicated in our recent news item on hepatitis B vaccination and MS, Dr Shepherd has written to the editor of the British Medical Journal:

Editor -

The results of the study (1) which suggest that hepatitis B vaccination (HBV) acts as a possible precipitating factor in the development of multiple sclerosis raise four important questions for the vaccine manufacturers and the regulatory authorities.

First is to what extent does HBV increase the risk of other autoimmune and neurological disorders. The manufacturers already acknowledge that such adverse events do occasionally occur, and there are numerous anecdotal reports in the medical literature linking HBV to serious conditions such as encephalitis (2), sero-negative arthropathy (3) and systemic lupus erythematosus (4). And as a physician with a particular interest in vaccine-induced myalgic encephalopathy/chronic fatigue syndrome, I now have details on a considerable number of people with this condition who predate the onset, or an exacerbation of pre- existing symptoms, to HBV (5).

Second is whether there are any reasons why HBV should be more likely to cause autoimmune and neurological complications when compared to other vaccines. A hypersensitivity reaction to the mercury-based preservative thiomersal in HBV is one possibility. Another possible explanation is that some individuals are genetically predisposed to such reactions - in a similar way to those who do not produce an adequate immune response to HBV - and that antigenic stimulation with HBV results in a pathological process, possibly involving immune complex formation, that leads to clinical disease..

Third is whether the current methods of vaccine post-marketing surveillance, which tend to concentrate on short and medium term side- effects, are capable of picking up these sort of adverse events.

Fourth is the issue of informed consent and whether people who are receiving a course of HBV are being properly informed about the potential risks - even though they appear to be very small. My own feedback is that most people are not. And this raises important medico-legal issues because many of those being vaccinated with HBV for occupational health reasons are being placed under considerable coercion by their employers to have this vaccine whether they want to or not.

Dr Charles Shepherd


1 Hernan MA, Jick SS, Olek MJ, Jick H. Recombinant hepatitis B vaccine and the risk of multiple sclerosis: A prospective study. Neurology 2004; 63: 838 - 842.

2 Tourbah A, Gout O, Liblau R, Lyon-Caen O, Bougniot C, Iba-Zizen MT, Cabanis EA. Encephalitis after hepatitis B vaccination - Recurrent disseminated encephalitis or MS? Neurology 1999; 53: 396 - 401.

3 Hassan W, Oldham R. Reiter's syndrome and reactive arthritis in health care workers after vaccination. British Medical Journal 1994; 309: 94.

4 Tudela P, Marti S, Bonal J. Systemic lupus erythematosus and vaccination against hepatitis B. Nephron 1992; 62: 236.

5 Shepherd CB. Is CFS linked to vaccinations? The CFS Research Review 2001; 2: 6 - 8. Available at:

- If you have ME/CFS and predate the onset of your illness, or an exacerbation of pre-existing symptoms, to hepatitis B vaccine then you may wish to submit a short case history report to the BMJ e-discussion on the recent paper in Neurology:

- See also Hepatitis B vaccination and multiple sclerosis (and ME/CFS) - 24th September 2004
- - -

Hepatitis B vaccination and multiple sclerosis (and ME/CFS)

Also at the MEA website, posted 24th September 2004:

The British Medical Journal has today carried a short report on a new study published in Neurology (2004; 63: 838 - 842) which supports the view that hepatitis B vaccination is a risk factor in the development of multiple sclerosis. This is an important development because other recent research has not found any such link and many doctors are now sceptical about the potential for this particular vaccine to cause autoimmune and neurological side-effects.

As people may know, I have a research interest in the link between vaccination and ME/CFS - in particular those cases where hepatitis B vaccine has either triggered ME/CFS or exacerbated a pre-existing diagnosis. Unfortunately, the BMJ rejected my submission of case reports on this subject to the paper journal because there were no controls in it. However, I now intend to submit an electronic report so that this information can enter the public domain. This I will do next week.

The BMJ report can be found at:

For a review of the possible link between vaccinations and ME/CFS that I wrote for the American The CFS Research Review

Dr Charles Shepherd, Medical Adviser, The ME Association

Follow-up: Dr Shepherd writes to the editor of the BMJ - 4th October 2004

Change of tune at the British Medical Journal?

The following notive was posted 21st August 2004 at the website of the M.E. Association, UK:

The British Medical Journal does not normally show any interest in research which supports a physical cause for ME/CFS.

However, in the BMJ this week (20 August 2004), the journal does refer to some interesting new findings relating to neutrophil apoptosis (= increased cell death involving a particular type of white blood cell) that was reported in the Journal of Clinical Pathology (2004; 57: 891 - 893).

The BMJ goes on to conclude: 'Evidence is emerging that people with chronic fatigue syndrome may have a detectable immunological abnormality'.

Dr Charles Shepherd, medical adviser to The ME Association, comments: "The BMJ may be 15 years behind the rest of us in coming to this conclusion - but better late than never! We look forward to further developments in their editorial policy which will result in closer attention being paid to research into the physical nature of ME/CFS and its causes."

More at:

The MEA criticises new CFS/IBS paper in BMJ

The following item was posted 28th May 2004 at the website of the M.E. Association in England:

'General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study'

Published in the 28 May 2004 edition of the British Medical Journal

Abstract of research sent to medical journalists:

Researchers analysed group discussions between 46 general practitioners in England, based on a series of clinical scenarios involving patients with chronic fatigue syndrome or irritable bowel syndrome.

The participants tended to stereotype patients with chronic fatigue syndrome as having certain undesirable traits. Patients with chronic fatigue syndrome were seen as failing to conform to the work ethic and lacking in stoicism.

In contrast, patients with irritable bowel syndrome "seem to battle through it" and were rarely "debilitated to such an extent that they were off work."

Even though GPs recognised that both conditions were influenced by a combination of biological, social and psychological factors, many did not consider referral for mental health interventions because they were unfamiliar with the interventions or thought them unavailable or unnecessary. Mental health interventions may help patients who have not responded to management in primary care.

These findings indicate that general practitioners' perceptions about patients with either condition may be a barrier to effective management, say the authors. To overcome these barriers, doctors must recognise their deeply held beliefs that mediate their understanding of complex disease mechanisms. Such a change in perceptions will need to be supplemented by the establishment of locally available effective interventions.


Rosalind Raine, MRC Clinician Scientist, Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK

Nick Black, Professor of Public Health Research, LSHTM

Simon Carter, Lecturer in Sociology, LSHTM

Tom Sensky, Professor of Psychological Medicine, Imperial College of Science, Technology and Medicine, West Middlesex University Hospital

Also available at the BMJ website here. (If this link fails, please use and follow 'current issue' then 'press releases'.)

Full paper available at:

Comment from The ME Association:

At a time when people with ME/CFS are becoming increasingly disillusioned with the fact that no government funding via the Medical Research Council is being directed at trying to find the underlying causes of a serious neurological illness that is thought to affect around 200,000 adults and children in the UK, The ME Association believes that this research is yet another example of the way in which funding is being wasted on studies that are of no real value to patients.

We have three major criticisms of this study:

1 The research does not tell us anything that is not already known about the attitudes and prejudices of some doctors towards patients with ME/CFS

For doctors, ME/CFS is a undoubtedly a very difficult illness to deal with as there is no diagnostic test and patients under the CFS umbrella cover a wide spectrum of clinical presentations. There are also serious differences of medical opinion over the definition, name, cause and management.

But with many patients being much better informed about current research than their doctors, this should be creating an environment in which doctors and patients work together. Unfortunately, this isn't always happening in practice when it comes to ME/CFS.

Neither is it surprising to find that conflicts arise when ME/CFS patients with no mental health problems are then referred to psychiatric clinics.

2 The observations from the doctors involved repeat a number of myths and prejudices about the illness and the people who have it

Despite a clear inference in the paper that ME/CFS is primarily a mental health problem, there is in fact solid research evidence which demonstrates important neurological, immunological and endocrine (hormonal) abnormalities. The World Health Organisation classifies ME and CFS as neurological disorders under section G93.3 in their most recent International Classification of Diseases (ICD 10). And this classification as a neurological disease is also fully accepted by the UK Department of Health.

Several research studies have also examined disability and quality of life measures in ME/CFS. These have shown that the scale of impairment across a range of physical and mental activities can be just as great, or greater, than is seen in other chronic medical conditions such as heart failure, kidney disease and multiple sclerosis. So to compare the disability and quality of life of people with ME/CFS to that of irritable bowel syndrome is just not appropriate.

Equally, there is no evidence from research studies to show that people with ME/CFS have some sort of weakness in their personality or are lacking in motivation to try and get better. In fact, all the research indicates that people with ME/CFS are highly motivated towards doing anything which might help them to improve and return to their normal form of employment or education.

3 The paper does nothing to correct the myths and prejudices which it refers to

We are extremely disappointed to find that the authors have made no attempt in their discussion of the results to try and redress the myths and prejudices which are expressed by some of the participating doctors. In fact, some of their conclusions - eg 'For chronic fatigue syndrome and irritable bowel syndrome, effective management includes a discussion about mental health interventions, particularly for patients who have responded poorly to other management options' - strongly suggest that they believe it is more appropriate to be treating ME/CFS as a mental health problem rather than a neurological disease.

NB: The ME Association wishes to make it clear that the above criticisms are not intended to stigmatise people with mental health problems or those who treat them. Mental health problems are genuine and can be just as disabling as ME/CFS. What we are saying is that ME/CFS is being wrongly classified as a mental health problem by many doctors. And as result, some people with ME/CFS are being inappropriately referred to the mental health services and then experiencing adverse consequences (including loss of benefits) that are inevitably associated with acquiring a mental health diagnostic label.

27 May 2004

The MEA calls for immediate stop to PACE an FINE trials

Here is a copy of the statement from the M.E. Association on the Pace Trial - posted 22nd May 2004


In May 2003 the Medical Research Council (MRC) announced funding for two clinical trials* to assess the effectiveness of various types of non-drug treatment for patients with ME/CFS.

The PACE trial (P = adaptive Pacing, A = graded Activity, C = Cognitive behaviour therapy: E = a randomised Evaluation) intends to evaluate the results of adding one of these three treatment approaches to what the MRC describes as 'usual specialist medical care' (USMC) in the six specialist ME/CFS clinics where participants will be recruited.

The PACE trial will be led by Dr Peter White (Saint Bartholomew's Hospital, London), Professor Michael Sharpe (University of Edinburgh), and Professor Trudie Chalder (King's College Hospital, London) - all of whom work in the area of either psychiatry or psychological medicine.

Funding for the PACE trial will come from the MRC, Scottish Chief Scientist's Office, and the English Department of Health and Department of Work and Pensions.

600 patients will be recruited from six different specialist ME/CFS clinical centres across the UK. These are situated in Edinburgh, Oxford and London (Saint Bartholomew's Hospital x2, King's College Hospital, Royal Free Hospital). Those who consent to take part in the trial will be randomly allocated to USMC alone or USMC plus 14 sessions involving one of the three different management options being evaluated.

Various categories of patients will be excluded from taking part in the PACE trial. These include children, the severely affected who cannot attend a clinic on a regular basis, those who have already attended a course of one of the treatments under investigation at a specialist clinic, and people with a very poor command of English.

The PACE trial is due to start later in the year.

ME Association position
A number of criticisms concerning the overall value of the PACE trial and the way in which it is going to be carried out have now been made by the ME/CFS patient community. The ME Association believes that many of these criticisms are valid. However, we believe that some are not.

The position of The ME Association is as follows:

We fully agree that research into the use of pacing as a form of management is worthy of further research. However, we believe that the money being allocated to the PACE trial is a scandalous way of prioritising the very limited research funding that the MRC have decided to make available for ME/CFS - especially when no money whatsoever has so far been awarded for research into the underlying physical cause of the illness or for pharmacological approaches aimed at either symptomatic relief or possible disease mechanisms. We therefore believe that work on this trial should be brought to an immediate close and that the money should be held in reserve for research that is likely to be of real benefit to people with ME/CFS.

But if the PACE trial is to continue:
1 We are concerned about the validity of results that will be obtained from comparing patients with USMC alone to those where a pacing programme has been added because usual medical care per se in a specialist clinic should contain reasonably detailed advice about activity and energy management that is often very similar to pacing. To omit advice about energy management would be unethical.

2 Overall, we believe that the PACE trial is unlikely to produce any significant further information about the potential benefits (as well as possible harmful effects) of these three forms of management in addition to that which has already been reported by patients, clinicians, and in the results from previous clinical trials.

3 We share some, but not all, of the concerns being expressed about the way in which patients will be chosen to participate in the trial. We also have concerns about the secondary analysis that is intended to demonstrate which sub-groups of patients may gain benefit from the three different additional approaches to management.

3.1 With regard to concerns currently being expressed about the use of Oxford criteria for the diagnosis of CFS (or a post viral/infectious fatigue syndrome sub-group): we believe there may actually be some advantage in using the Oxford criteria for selection of patients - despite its many obvious defects. The Oxford criteria covers a very wide spectrum of chronic fatigue patients and this would also include almost all of those with Ramsay described or London defined ME of six months or more duration.

3.2 If the entry criteria were to be changed to Fukuda et al, then this would have the effect of excluding a significant minority of people with ME from taking part.

3.3 There is no point in asking for the Canadian criteria to be used as entry criteria as they are not designed or validated for research purposes.

3.4 Consequently, if the PACE trial contains a large number of people under the CFS spectrum with the intention of then doing a secondary analysis of responses according to other diagnostic criteria, there is obviously some merit in using the Oxford criteria as the starting point.

3.5 As far as secondary analysis of the results is concerned, we believe that the London criteria is a satisfactory way of sub-grouping the ME patients. But we also believe that there should be other ways of sub-grouping the results - eg presence or absence of psychiatric co-morbidity. We are not convinced that this aspect has been properly thought through.

3.6 As far as the issue of Oxford criteria excluding people with a proven clinical diagnosis of an organic brain disease (section f.ii), it could be argued that this is not consistent with WHO ICD10 classification of ME and CFS as neurological disorders under G93.3 ('other disorders of the brain'). However, in practice, we do not believe that this is going to be a way of preventing people with Ramsay described ME or London defined ME from taking part in the trial.

4 We share the concerns being expressed relating to informed consent, particularly in relation to patients who are selected to take part in graded exercise therapy. The Chief Medical Officer's report (section noted that 50% of ME/CFS patients reported that graded exercise had made their condition worse, and we therefore believe that anyone volunteering to undergo graded exercise therapy must be made aware of these findings as well as the observations from clinicians and research studies made in the CMO report.

4.1 Furthermore, we believe it is disingenuous to describe this as a PACE trial when intervention A equates to graded exercise and not simple activity - it should therefore be a PECE trial with E = exercise. In therapeutic and physiological terms there is an important difference between the two descriptions: graded exercise involves a progressive increase in aerobic activity (ie oxygen requiring) that is designed to increase heart rate and breathing whereas simple activity does not.

5 We do not believe that patients whose primary diagnosis is fibromyalgia should be entered into the trial. Although there is some overlap between fibromyalgia and ME/CFS, and it may co-exist with ME/CFS, fibromyalgia on its own is classified as a separate clinical entity in WHO ICD10 under 'soft tissue disorders' in section M79. Fibromyalgia should therefore be one of the 'established medical conditions known to cause chronic fatigue' as described in exclusion criteria listed in section f.i of the Oxford criteria.


Canadian criteria:
ME/CFS: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome, 2003, 11, 7 - 116.

Fukuda et al criteria:
Fukuda K, Straus S, Hickie I, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994, 121, 953 - 959.

London criteria:
Dowsett EG, Goudsmit E, Macintrye A, Shepherd C. London criteria for ME - Report for the National Task Force on chronic fatigue syndrome (CFS), post-viral fatigue syndrome (PVFS), myalgic encephalomyelitis (ME). Westcare, 1994, 96 - 98.

Oxford criteria:
Sharpe M, Archard L, Banatvala J, et al. Guidelines for the conduct of research into the chronic fatigue syndrome. Journal of the Royal Society of Medicine, 1991, 84, 118 - 121.

CMO report on-line:

*The second treatment trial, known as FINE, (Fatigue Intervention by Nurse Evaluation) is wholly funded by the MRC. This is a form of what the MRC term 'rehabilitation therapy' which will be delivered by specialist community nurses in the patients' own homes. The FINE trial will involve patients in the North West of England and North Wales. The ME Association is not convinced by the evidence so far put forward in support of this approach. And as with the PACE trial, we do not believe that this is a sensible way of prioritising limited research funding. Consequently, we believe that all further work on this trial should also be halted and the money kept in reserve for other ME/CFS research.

May 2004

Important new neurological research findings

Here is a copy of news posted 20th May 2004 at the website of the M.E. Association, UK:

Dr Abhijit Chaudhuri, along with neurological and physics colleagues at the University of Glasgow, are about to publish some interesting new research in the June edition of PAIN which may help to explain the underlying cause of exercise-induced pain in ME/CFS.

Reference: 'Exercise lowers pain threshold in chronic fatigue syndrome'
PAIN. June 2004, v109, pp 497 - 499.

Post-extertional muscle pain is an important reason for disability in patients who are diagnosed to have chronic fatigue syndrome (CFS). We compared changes in pain threshold in five CFS patients with five age and sex matched controls following graded exercise. Pain thresholds, measured in the skin web between thumb and index finger increased in the control subjects with exercise while it decreased in the CFS subjects. Increased perception of pain and/or fatigue after exercise may be indicative of a dysfunction of the central anti-nociceptive* mechanism in CFS.

Dr Charles Shepherd
Medical Adviser, The ME Association

*anti-nociceptive = having an analgesic effect or reducing sensitivity to painful stimuli.

Wednesday, January 05, 2005

Fibromyalgia: New Insights Into a Misunderstood Ailment

The following report appeared at Jan 1. It says fibromyalgia (FMS) is closely related to chronic fatigue syndrome (CFS), and that the body's endocrine system could hold the clue to treatment. Note to self to find a report that explains the difference beetween CFS and FMS. Here is the report:

Fibromyalgia was once dismissed by many traditional medical practitioners as a phantom illness. But that view is changing rapidly. Not only is fibromyalgia accepted as a diagnosable illness, it is also a syndrome that researchers are finding more complicated as new information emerges.

As recently as a year ago, many physicians still associated some of fibromyalgia's symptoms with emotional problems, but that's no longer the case.

A simple description of fibromyalgia is that it is a chronic syndrome characterized by widespread muscle pain and fatigue.

For still unknown reasons, people with fibromyalgia have increased sensitivity to pain that occurs in areas called their "tender points." Common ones are the front of the knees, the elbows, the hip joints, the neck and spine. People may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety and other symptoms.

According to the American College of Rheumatology, fibromyalgia affects 3 million to 6 million Americans, 80 percent to 90 percent of whom are women. The condition is most often diagnosed during middle age, but at least one of its symptoms appears earlier in life.

But is there a psychological tie-in strong enough to differentiate fibromyalgia from other similar diseases and conditions? Apparently not.

"Fibromyalgia patients are such a diverse group of patients, they cannot all be the same," said Dr. Thorsten Giesecke, a University of Michigan research fellow.

Giesecke and his colleagues evaluated 97 fibromyalgia patients, including 85 women and 12 men. The patients underwent a two-day series of tests, answering questions about their coping strategies and personality traits -- particularly their emotional well-being. They were also tested for sensitivity to pressure and pain.

"It's generally been thought that fibromyalgia patients who have higher distress have higher pain sensitivities," Giesecke said.

In other words, it was believed that those with fibromyalgia who were prone to emotional difficulties such as depression and anxiety were more likely to experience greater physical pain.

But his study didn't bear that out. In fact, patients in one of the three groups in the study who had the highest pain levels had the lowest anxiety.

The term fibromyalgia comes from the Latin word for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia). Tender points are specific locations on the body -- 18 points on the neck, shoulders, back, hips and upper and lower extremities -- where individuals with fibromyalgia feel pain in response to relatively slight pressure.

The U.S. government's National Institute of Arthritis and Musculoskeletal and Skin Diseases says fibromyalgia patients often experience combinations of many other chronic and frustrating symptoms, including:

sleep disturbances,
morning stiffness,
irritable bowel syndrome,
painful menstrual periods,
numbness or tingling of the extremities,
restless leg syndrome,
temperature sensitivity,
cognitive and memory problems, sometimes referred to as "fibro fog."

Latest research indicates that fibromyalgia is the result of internal biochemical imbalances that cause physical symptoms such as pain, weakness and mental impairment. Because it is a syndrome -- a collection of signs and symptoms -- rather than a disease, fibromyalgia can't be diagnosed by an invariable set of specific symptoms or reproducible laboratory findings.

Even with the findings about relatively small psychological influence, practical experience seems to indicate that stress may play a role. Roger H. Murphree, a Birmingham, Ala., chiropractor who specializes in treating patients with fibromyalgia and chronic fatigue syndrome, said he has seen a link between stress and the intensity of fibromyalgia.

"Most of us live in a world of stress," Murphree said. "Something has to give, and it's usually sleep. Meanwhile, we subsist on junk food, caffeine, alcohol and prescription medications. Such a lifestyle isn't good for anyone. But for an unlucky few, the toll is severe."

Dr. Jacob Teitelbaum, whose practice in Annapolis, Md., led him to do research into fibromyalgia and the closely related chronic fatigue syndrome, concluded that the body's endocrine system could hold the clue to treatment. It's a matter of how the body's energy is marshaled, he said.

"Fibromyalgia is like the body blowing a fuse," he explained. "The hypothalamus serves as humans' internal fuse box. When the demands of living build up, stress increases and the hypothalamus shuts down. Because the circuit is overtaxed and the fuse is blown, the body simply can't generate enough energy."

"That causes muscles to cease functioning in a shortened position, resulting in pain all over the body and a general feeling of fatigue or weariness," Teitelbaum said.

Murphree's experience with hundreds of patients confirms Teitelbaum's analogy. Most, he said, are either "Type A" perfectionists or "Type B" caregivers.

"Type A fibromyalgia patients work and work and work until they burn out," said Murphree. "Type B patients give and give and give -- nurturing their spouses, children, family and friends -- until they break down. Anyone whose lifestyle includes very little downtime is at risk."

Teitelbaum recommends a four-pronged approach to repair the "blown fuse" and turn the body's current back on:

Restoration of sleep -- at a minimum, eight to nine hours every night, using appropriate medications, as needed;

Restoration of a normal hormone balance, including thyroid, adrenal and reproductive hormones;

Appropriate treatment for infections that may be present as a consequence of the body's depleted immune function;

Nutritional support, particularly with B complex vitamins, magnesium, zinc and malic acid.

Teitelbaum uses the acronym SHIN to summarize his treatment regimen. "S is for sleep, H for hormone balance, I for infection control, and N for nutrition," he explained. "The important thing is that all four should be implemented in concert with one another for maximum therapeutic effect."

More information:

Health experts recommend sleep, nutrition goals for sufferers.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases ( ) offers more information on fibromyalgia.

Copyright © 2005 ScoutNews LLC. All rights reserved.

Tuesday, January 04, 2005

The Alliance Blogs and Pro-Life - Seeking a silent 30-minute timer-alarm clock

If you fancy a browse, please take a look at my new sidebar. It is crammed with a list of a great selection of blogs. They were easy to insert with simple codes from Pro-Life and The Alliance.

I have also pasted the codes into my personal blog ME AND OPHELIA and at Sudan Watch. Three new blogs have already linked to me since yesterday, which is great because it comes as a nice friendly suprise when I check out my list at Technorati and makes the day more interesting as I click into the link and read about someone new who I probably would never have met otherwise.

Why not do the same? If you are not keen on having so many showing in your sidebar, you can always delete the codes if you are not happy. I think it's a great way to meet new people who are open to being friendly (they wouldn't have bothered linking to Pro Life and The Alliance).

Also in the sidebar (thanks to SB at Abide for the request) I have installed Bloglines, Blogroll Me! and Feedburner. Sorry about these rather scrappy posts and unfinished blog template. I have been busy but look forward to getting this blog properly sorted before starting my six week long "aggressive rest programme" that I aim to log here on a daily basis. My hallway here at home is yet to be redecorated (painter is due 2nd or 3rd week January) and after that new carpet laid sometime February. By April I hope I will have everything in place to start the important new regime that I have been planning for the past two years. More on this at a later date.

In the meantime, for any new visitors here: if you or anyone you know suffers from ME/CFS/CFIDS or FMS - please point them in this direction for a warm welcome and hello and share any news or tips. Thank you.

A silent 30-minute timer/alarm clock

As part of the rest programme I am planning on, one thing I am missing that I have not been able to find over the past year is a silent timer/alarm clock.

Does anyone know of a "timer/alarm" clock I can install on my PowerBook G4? I would like some sort of alert to show silently (or make a soft sound if necessary) that will alert me every 30 minutes that I am on the computer. In my six week rest programme, I will need to stop everything and rest for five minutes after every 30 minutes. If I use an ordinary alarm clock it'd be too stressful setting it 30 or more times a day. And if it has a piercing alarming ring, it might get too annoying by the end of each day. I need the modern equivalent of a grandfather clock that signals an alert every half hour - or even quarter hour.

But here's the snag. I surf for 30 minutes - alert sounds - I stop and rest for 5 minutes - so the timer needs to start a new 30 minute cycle from the time I start using the computer again. So I guess I need something along the lines of a stopwatch that is simple to stop and re-set (I would like to time the five minute rests too, so I don't spend the rest time using up brain cells wondering when the five minutes will be up!) Resting is not as simple as it sounds. You have to concentrate on relaxing and not working the brain either.

Also, I would like to use the timer/stopwatch when visitors are here, so I know when to rest mid conversation. That way, my energy will last longer during the visit which means visitors can stay for longer than just an hour or two without wiping me out for days or even weeks afterwards.

Ideally, I am looking for two things: (1) a timer/alarm to use on the computer that maybe even switches down the page after 30 minutes (2) a timer/stopwatch that doesn't make a loud ticking noise (noise really bothers me), is easy to use and signals a (quiet) alert every thirty minutes.

I wonder what deaf people use as a kitchen timer. My kitchen timer would be perfect as all I'd need to do is turn a gripper in the middle of the face to 30 minutes. It works great but ticks so lound and has such a shrill alarm, I keep it in kitchen to time something in the oven because I can hear the ticking in the next room.

Maybe what I am looking for is a kitchen timer or fob type watch that can be worn around the neck or if necessary the wrist.

This may seem like a simple request but I have spent many days over the course of the past year looking on the internet. There is such an overwhelming number of clocks and watches on the market, I thought I would ask here incase a reader knows of the sort of thing I need. Thanks. Please excuse this unedited long winded post. My concentration has slowed after getting the sidebar stuff together. My blogmates will be added to the sidebar soon. Must rest now.

Monday, January 03, 2005

Clinical trial with Ampligen

The following is a copy of a report on Ampligen, filed here for future reference incase Ampligen proves to represent a breakthrough for ME/CFS sufferers.

Esteve was granted the exclusive right to market Ampligen(R) in Spain, Portugal and Andorra for the treatment of Chronic Fatigue Syndrome (CFS).

Hemispherx Biopharma Initiates Enrollment in HIV/HEP-C Clinical Program; Clinical Trial with Ampligen in Collaboration with Esteve Laboratorios Targets HIV/HEP-C Twin Epidemics

PHILADELPHIA--(BUSINESS WIRE)--Jan 3, 2005 - Hemispherx Biopharma, Inc. (AMEX: HEB) announced today that its partner Esteve Laboratorios, Spain, initiated a clinical program to evaluate the antiretroviral effect of Ampligen in the treatment of patients infected by HIV-1 (with or without co-infection by HCV) and virological failure with a randomized pilot study in Phase II, controlled with standard treatment.

In March 2002, Hemispherx S.A., a subsidiary of Hemispherx Biopharma, entered into a Sales and Distribution Agreement with Esteve. Pursuant to the terms of the Agreement, Esteve was granted the exclusive right to market Ampligen(R) in Spain, Portugal and Andorra for the treatment of Chronic Fatigue Syndrome (CFS). In addition to other terms and other projected payments, Esteve agreed to conduct, at its expense, certain clinical trials using Ampligen(R) in the patient population co-infected with Hepatitis C and HIV viruses.

At present, no single drug or biological product has been deemed by internationally recognized regulatory agencies as effective against both viruses, when coexisting in the same patients.

About HIV/Hep-C Co-Infection

About 40% of people living with HIV are co-infected with HCV, with disproportional high co-infection rates among intravenous drug users. Both HIV and HCV are chronic viral illnesses, and there are similarities in the mechanisms of viral reproduction (also known as replication) and acute infection. Both HIV and HCV replicate in the body at an incredibly fast rate. Data gathered from 4,000 HIV-infected individuals indicates that liver failure due to HCV is the leading non-AIDS cause of death in people with HIV. Additionally, studies have shown that HIV worsens HCV infection. Individuals co-infected with HIV and HCV are about twenty times as likely to experience liver failure as individuals infected with HCV alone. Just as HIV mutates, resulting in drug-resistant strains, HCV can also mutate. If HCV is under pressure from medications that block replication, it will mutate at increased rates.

About Esteve Laboratorios

Esteve is one of the largest pharmaceutical-chemical corporations in Southern Europe, with an international presence through subsidiaries in Italy and Portugal and worldwide licenses and distributors. Since 1960, Esteve has established strategic alliances with multinational pharmaceutical chemical companies to develop and market their products in Europe. Esteve has established its own successful research and development capabilities, developing new chemical entities and manufacturing active pharmaceutical ingredients with its research products marketed in over 90 countries.

More information about Esteve is available at

About Hemispherx

Hemispherx Biopharma, based in Philadelphia, is a biopharmaceutical company engaged in the manufacture and clinical development of new drug entities for treatment of viral and immune-based chronic disorders. Its flagship products include Alferon N(R) and the experimental immunotherapeutics/antivirals Ampligen(R) and Oragens(TM). These novel proteins, approved for a category of STD infection, and experimental nucleic acids are being developed for globally important chronic viral diseases and disorders of the immune system including HPV, HIV, CFS and Hepatitis. Its platform technology includes large and small agent components for potential treatment of various chronic viral infections. Hemispherx has approximately 270 patents comprising its core intellectual property estate, a fully commercialized product (Alferon N(R)) and GMP certified manufacturing facilities for its novel pharma products. For more information please visit

Information contained in this news release other than historical information, should be considered forward-looking and is subject to various risk factors and uncertainties. For instance, the strategies and operations of Hemispherx involve risk of competition, changing market conditions, change in laws and regulations affecting these industries and numerous other factors discussed in this release and in the Company's filings with the Securities and Exchange Commission. Any specifically referenced investigational drugs and associated technologies of the company (including Ampligen(R) and Oragens(TM)) are experimental in nature and as such are not designated safe and effective by a regulatory authority for general use and are legally available only through clinical trials with the referenced disorders. The forward-looking statements represent the Company's judgment as of the date of this release. The Company disclaims, however, any intent or obligation to update these forward-looking statements. Only Clinical Studies under well-controlled conditions can establish efficacy and safety of any product. Clinical trials for other potential indications of the approved biologic Alferon(R) do not imply that the product will ever be specifically approved commercially for these other treatment indication.

Contact Hemispherx Biopharma Investor Relations: Dianne Will, 518-398-6222 or Investor Relations Group John Nesbett / Erik Lux 212-825-3210

Further reading:

Sep. 28, 2004: Hemispherx Biopharma to Present New Data on Activity of Ampligen in Treating Chronic Fatigue Syndrome at Annual CFS Conference

Oct 16, 2004: Ampligen Data Presented at the 7th International Conference for Chronic Fatigue Syndrome