Wednesday, November 25, 2009

Current concerns

For the first time since my entire digestive tract was inflamed top to bottom my weight has dropped to under 9 stone (around 57kg) despite my gastric symptoms being ok for me...

( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)

I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum

C.F.S. Q&A

Worth a read...

Times Delivers E-Mail - Sign Up:

"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?

A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."

Monday, November 16, 2009

More evidence of inflammation in (ME)CFS

Margaret Williams 14th November 2009

In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder

( ).

White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.

Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.

"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.

"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.

"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.

"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell

Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?

Sunday, November 15, 2009

Chronic fatigue syndrome: neurological, psychological or both?

Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London Medical School

A long read but well worth it


Neurology and Psychiatry SpRs Teaching Weekend

12 to 14 December 2008 St Anne's College - Oxford




09:50 Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London
Medical School

The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".

During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:

"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."

See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:

Prof Peter White discouraging RSM Conference from using ICD-10:

In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:

Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary

In the section "Implications for Further Research" the authors state that
because the paper finds that:

"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"


Extract: presentation given at Neurology and Psychiatry SpRs Teaching

Chronic fatigue syndrome: neurological, psychological or both?

Peter White, Professor of Psychological Medicine, Barts and the London
Medical School

Epidemiology of fatigue and CFS

Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.

At the same time, fatigue is continuously distributed within the community,
with no point of rarity.

Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.

Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.

There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.

The diagnosis and classification of CFS

The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health

[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]

Friday, November 13, 2009

comments on meeting of the Chronic Fatigue Syndrome Advisory Committee

One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.

I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.



Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to ( We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
To learn more about our XMRV tests, CLICK HERE."



A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.

Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.

ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
pulmonary disease.

There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.

Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.

A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!

The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.

The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.


Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.

Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.

Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775 (here you can download the full text)

Thursday, October 29, 2009

CBT & GET in ME/CFS Harmful for Patients -Review

CBT = cognitive behavioural therapy
GET = graded exercise therapy

Society of Integrated Sciences


Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating disease which, despite numerous biological abnormalities has
remained highly controversial.

Notwithstanding the medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted by many governmental organizations and medical professionals to legitimize the combination of Cognitive Behavioral Therapy (CBT) and Graded
Exercise Therapy (GET) for ME/CFS.

Justified by this model CBT and GET aim at eliminating presumed psychogenic and socially induced maintaining factors and reversing deconditioning, respectively.

In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust.

CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them
adversely, the majority of them even reporting substantial deterioration.

Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients.

Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, fatigue", and weakness, and a long lasting "recovery" time.

This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune
dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis.

We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies",such as CBT/GET.

Monday, October 26, 2009

Support the 500 Professionals of the IACFS/ME – Reeves Must Go


Support the 500 Professionals of the IACFS/ME – Reeves Must Go

On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.

We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.

Under Reeves’ direction the CFS program is being slowly strangled.

A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.

Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.

What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”

Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.

Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.

Bill Reeves must be held accountable.

Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.

CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?

Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.

We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.

Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.

If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place. Ask your elected officials to have aids attend.

The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.

Reeves must go.

Sunday, October 25, 2009

CFS Public Health Research Program 5-year Strategic Plan | CDC Chronic Fatigue Syndrome

CFS Public Health Research Program 5-year Strategic Plan | CDC Chronic Fatigue Syndrome:

Heavy reading but could impact on the future treatment and well being of all with CFS

"Laboratory Studies
The integration of laboratory studies with specific CFS research protocols helps to clarify associations of behavioral and environmental risk factors (including infection) with clinical and psychosocial attributes of CFS, to identify subsets of the illness CFS, and to identify potential therapeutic targets.

Measure neuroendocrinologic, metabolic, immunologic, and infectious characteristics of CFS
Evaluate genetics, epigenetics, and gene expression
Identify potential diagnostic and therapeutic agents
Evaluate the potential association of human herpes virus 6 (HHV-6) and xenotropic murine leukemia virus-related virus (XMRV) with CFS using specimens from well-characterized patients and matched controls
Maintain a biorepository of clinical specimens collected during population and clinical studies for in-house and collaborative molecular analyses
Develop a funding opportunity announcement to explore the application of novel pathogen discovery approaches to existing, well-characterized clinical specimens...

Clinical Intervention Studies
Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol development will begin in late 2010-2011, with studies continuing through 2013.

Evaluate cognitive behavioral therapy and graded exercise in participants
Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress, psychiatric comorbidity, cortisol responsiveness, and fMRI changes"

Pacing and CFS

I don't have the (mental) energy to blog every day, although I often have a siesta maybe I should follow this advise and make sure I rest every day rather than fighting it?

Pacing is not a quick fix or a
panacea. It requires many small
adjustments in how you live your
daily life. It’s not a single action or
strategy, but rather a way of living
with CFS. But the rewards of pacing,
used consistently, are greater control,
lower symptoms and, for some,
expansion of the energy envelope
and even recovery.

Physiological cost of walking in those with chronic fatigue syndrome

Interesting research showing those with CFS have physiological differences to those without...a verifiable symptom which I very much doubt would be changed in any way by CBT.

AddThis utility frame: "Conclusion: The physiological cost of walking was significantly greater for people with CFS compared with healthy subjects. The reasons for these higher energy demands for walking in those with CFS have yet to be fully elucidated."

Thursday, October 22, 2009

Martin Pall on XMRV

Comments on XMRV, CFS and Fibromyalgia by Martin Pall

From Teewinot

Comment: These data apparently show that XMRV is not specific for CFS/ME but rather occurs in other disease states, as well as in some normals. My own view is that this makes it much more likely to be an opportunistic disease, caused by the changes in immune function and other properties of these diseases, rather than a primary cause. Specifically, the retrovirus, based on its DNA sequence, has its replication stimulated by NF-kappaB activity, an activity that is elevated as part of the NO/ONOO- cycle and has been reported to be elevated in CFS/ME. Furthermore, the low NK cell activity and other types of immune dysfunction, that occurs in these various diseases, may also be expected to stimulate the ability of the virus to maintain itself in disease sufferers.

In order to show that it is the primary cause of CFS/ME, it is necessary to show that XMRV follows Koch's postulates, but so far it does not apparently follow Koch's first postulate, which requires that it always occurs in people with the disease but does not occur in normals. The other three Koch's postulates have not been tested.

In contrast to that, we have a good fit to the five principles underlying the NO/ONOO- cycle for both CFS/ME and fibromyalgia. Because one can argue that the fit to these five principles serve very much like Koch's postulates for NO/ONOO- cycle disease, I will argue that we have a substantially more compelling case for a NO/ONOO- cycle etiology than we do for an XMRV infectious etiology for either CFS/ME or fibromyalgia.

That does not mean that XMRV is unimportant, however. Even if it turns out to be an opportunistic infection, like mycoplasma and HHV-6 are, it still may contribute to the etiology of the disease. And it still raises the question of whether we can cure cases of CFS/ME and fibromyalgia simply by normalizing the NO/ONOO- cycle as opposed to normalizing it and also using antivirals to depress XMRV and/or HHV-6. This is a question and I don't claim to have the answer to it, although my hope is that normalizing the cycle will also cure at least some of these infections, that may not be true.

There have been comments in the media to the effect that this finally shows that CFS/ME is physiological, not psychological. This is true, but this should have been obviously true anyway, at least six or seven years ago. Nevertheless the media coverage of CFS/ME obtained by Mikovits and her colleagues must be viewed as a true gift to those interested in extending public knowledge of this disease.

Martin L. (Marty) Pall

European Commission answers a question on Fibromyalgia and Chronic Fatigue Syndrome

They exist, hurrah!!!!

[One can see this answer in different European languages by going to:

Questions parlementaires

Answer given by Ms Vassiliou
on behalf of the Commission

As the Commission has indicated in its replies to written questions E
4898/08 by Mr Kilroy-Silk, E 6262/08 by Mr Popa and E-3734/09 by Mr Higgins
, the nature of the two disorders, Fibromyalgia and the Chronic Fatigue
Syndrome (CFS), have been, during years, controversially discussed. This
situation had given rise to major differences of opinion concerning the
ability of fibromyalgia and CFS patients to work, and to their entitlement
to social security benefits. In such context of scientific controversy, it
was difficult for the Commission to promote actions related to these
diseases. Nowadays it appears as an established and accepted fact that these
syndromes are genuine, severe and incapacitating disorders, even if
controversies remain, and even if there are still discussions in relation to
their most appropriate terminology and classification.

Consequently, the current version of the International Classification of
Diseases (ICD-10) includes Fibromyalgia (Code M79.7) and there is no reason
for refusal of treatment in any Member State on the basis of a supposed non
existence of the disease as in the past.

Wednesday, October 21, 2009

ME/CFS to be treatable?

AddThis utility frame:

"But the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.

The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science....

But now things are different. Now I am not going to be too optimistic - I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare.

The question is whether this occurs next year or 20 years from now."

Energy Index Point Score® (EIPS®)

About Chronic Fatigue Syndrome (CFS)
Chronic Fatigue Syndrome, also called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephylomyelitis (ME), affects as many as 4 million people in the US alone, by CDC estimates, with a quarter disabled. It affects more Americans than AIDS, lung cancer and breast cancer combined. Research by the National Chronic Fatigue foundation found CFS sufferers average age of death to be as much as 20 years premature to the average American.

It is a multi-symptom disease, affecting the cardiovascular, immune and central nervous system. The most publicized symptom of the disease is the crippling fatigue, with most patients bed-ridden for all but a few short minutes or hours per day. To the naked eye these patients may look healthy, due to the "invisible" nature of the symptoms, many times causing confusion regarding its legitimacy.
Energy Index Point Score® (EIPS®)
A Functional Capacity Measurement Tool
for Chronic Fatigue Syndrome (CFS) Patients

This is going on my cork board, great to use for showing doctors, consultants etc the extent of your disability

Re Universal Measurement tool for Chronic Fatigue Syndrome

Hope it is ok to repost it but it sounds like a valuable tool for both doctors and patients...

For Immediate Release
Ann Cavanagh, Communications Director
Dr. A Martin Lerner CFS Foundation
+1 415.990.7150

Physician Challenges Chronic Fatigue Syndrome Community to Implement Universal Measurement Tool

• Universal tool for Chronic Fatigue Syndrome (CFS) will improve evaluation, treatment and legitimacy of disease
• Energy Index Point Score® (EIPS®) Measures Disability of CFS Patients
• EIPS® validated through research published In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research

BEVERLY HILLS, MI – October 19, 2009 — Dr. A. Martin Lerner of the Treatment Center for Chronic Fatigue Syndrome ( in Beverly Hills, MI issues an immediate call to action to the Chronic Fatigue Syndrome (CFS) community - in an effort to implement a universal measurement guideline for the treatment of CFS.

"The CFS community urgently requires a common measurement to evaluate and treat patients. Just as oncologists are able to determine treatment and prognosis based on the stage of cancer, an infectious disease physician can do the same for CFS," says Dr. A. Martin Lerner, Founder of The Treatment Center for CFS in Beverly Hills, MI.

"With measurement tools comes a common language for research, a universal standard for evaluation and treatment, and ultimately the legitimacy this disease deserves. I issue a call to action today, to physicians and patients alike, to join me in using the Energy Index Point Score® system for treatment of CFS."

Dr. A. Martin Lerner of The Treatment Center for CFS in Beverly Hills, MI has devoted the past 20 years of his life to research and treatment of CFS after recovering from the disease himself. During his efforts, Dr. Lerner realized the need for a measurement tool to evaluate the degree of disability for each patient, as well as track the success of each recovery. Without a benchmark, fatigue was too subjective and difficult to measure. From this need he created the Energy Index Point Score® (EIPS®), Registered, U.S. Patent and Trademark Office - a functional capacity measurement tool for CFS patients (reference attached PDF for the EIPS® system).

The EIPS® system defines the severity of patient fatigue, 0-10, through measurement of real-life situations including one's ability to sit, stand, be out of bed, work, perform housework, socialize, exercise. The EIPS® level is determined through discussion between the physician and patient. A change in EIPS® level of one is a significant change in health and lifestyle for the patient, as CFS symptoms decrease when the EIPS® increases. For full EIPS® tool visit

"Using the EIPS® as a benchmark for my practice and research has improved my ability to gauge illness as well as capture individuals' improvements. It is also an extremely helpful teaching tool for discussing parameters with a patient…what they can and can't do as they heal" says Dr. Lerner.

"As a CFS patient, the EIPS® has helped me understand what my short-term and long-term goals are and should be. For example, I know that I'll relapse again if I start to exercise before I'm an 8," says Carol Gill, CFS patient of the Treatment Center for CFS. "Before I started treatment with Dr. Lerner I didn't know how to manage my symptoms. I was up one month and down the next. With the use of his EIPS® management tool I've watched myself steadily improve over time."

The EIPS® has been validated as a measurement for disability in patients with CFS through a research effort published by In Vivo: The International Journal of Experimental and Clinical Pathophysiology and Drug Research, entitled "Validation of the Energy Index Point Score to Serially Measure the Degree of Disability in Patients with Chronic Fatigue Syndrome."

"In an effort to move forward in the treatment of this horrible affliction, we as doctors need to join together and assess patients uniformly. Just as the US government has assigned standard categories for storms in order to assess damages and prepare next steps, we as doctors who treat CFS need to rely on benchmarks for our patients in order to assess physical ailments and prepare our next steps," says Dr. Lerner.

XMRV - the Potential For Change
by cort on October 19, 2009

This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out - still an if - one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now. The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now. One wonders if any disease has had such a dramatic turnaround as this one may be in store for....

So what could happen if this finding really works out? What can we expect if this virus is shown to cause ME/CFS (and possibly other diseases ). Why not dream a little?

Funding explodes - Chronic Fatigue Syndrome is funded like a small disorder but it’s not a small disorder. It effects about 1 million people. Studies have shown that it causes about 25% of those affected to go on disability. It costs families about $20,000 a year. It costs the nation about $20 billion dollars a year in economic losses. That’s a lot of money even for a disease.
Yet this major disease is ranked about 210th in rank of the 215 diseases and conditions in NIH funding. It receives about 3 million dollars a year from the NIH. That’s chicken feed, chump change the NIH throws to keep the beggars quiet. It’s a rounding error for AIDs funding.
It’s definitely not disease solving money - you can’t solve any disease at three millon dollars a year. Ten million dollars is still peanuts and hardly worthy of mention. Consider that asthma causes much lower economic losses than ME/CFS yet gets 250 million dollars a year in federal funding. What this means is that there’s ample, ample room for this field to grow. Given its size and scope once this disease is validated think hundreds of millions of dollars A YEAR in funding once the field gets built up. That’s more funding in one year than this disease has gotten in twenty.
New Faces and New Places - Expect a lot of new faces from a lot of high places as the field starts to leverage the assets of a huge cadre of pathogen researchers.
Bye- Bye Office of Women’s Research Hello NIAID - The little CFS program that’s been slowly sinking in the backwater that’s called the Office of Research Of Women’s Research (ORWH) where its received no funding (that’s no funding!) gets moved back into the mighty billion dollar National Institute of Allergy and Infectious Diseases (NIAID).
CDC - After wiping the egg off their face expect things to change at the CDC. It’s hard to imagine them keeping around a virologist (Dr. Reeves) who not only missed the biggest virology in several decades but publicly trashed the finding and has had little interest in anything viral in this disorder. Let’s not forget the virologists at the CDC that will probably be salivating at the chance not only to unlock the mysteries of chronic fatigue syndrome but perhaps fibromyalgia, autism, prostate cancer and other disorders. If this works out the CDC, like any institution,will want its share of the glory. Look for it to throw its ace virologists into the fray.
Ampligen - Expect Ampligen to finally be approved by the FDA either now or not long from now. If not now expect a well designed, well-funded study (finally!) to quickly show the drug works and for it to get approved shortly after that.
Treatment Studies - expect a slew of treatment studies from drug manufacturers seeking to expand the market for their products.
Another Dream to Come True - Expect Annette Whittemore’s dream - of multiple WPI’s centered around the present (but larger) WPI - to come true.
Annette Whittemore Wins the Nobel Prize - OK, so that’s unrealistic but she, her husband, Dr. Peterson, Dr. Mikovits, Dr. Lombardi and the team should win our version of the Nobel Prize (whatever that is)
Right now there’s still alot of hard work ahead and critical questions to answer and if it does happen it will take time but there’s reason to believe it could. Researchers often, at least in public, play down expectations but the WPI has not. Both in their public announcements and even more so behind the scenes they are very confident in their findings.

Saturday, October 17, 2009


Strong words indeed!

R.E.S.C.I.N.D.: "Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009"

RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history...

Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the
Cause of Fatigue Syndrome?” - posted online Oct 15, 2009

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V.
patients. My H.I.V. patients for the most part are hale and hearty thanks to
three decades of intense and excellent research and billions of dollars
invested. Many of my C.F.S. patients, on the other hand, are terribly ill
and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I
had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name
Change Movement

Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).

Friday, October 16, 2009

The ME Association - MEA statement on retrovirus XMRV and ME/CFS

The ME Association - MEA statement on retrovirus XMRV and ME/CFS: "ME ASSOCIATION POSITION

These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.

However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS. Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below:

Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.
Using different international laboratories to test for evidence of the virus.
Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, and (c) various other factors involved in sub-grouping of people under the ME/CFS umbrella.
Assessing to what extent this virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.
Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a 'passenger virus', or whether it has a role in the actual disease process and development of symptoms.
Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer - rather than being involved in th"

Wednesday, October 14, 2009

Treating Chronic Fatigue Syndrome (ME/CFS): XMRV

The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people. Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases.” Annette Whittemore

Treatment information is still decidedly sketchy. At the Reno Conference Annette Whittemore evoked the possibility that the Institute was on the road to uncovering unusual drugs that would prove helpful and indeed the Institutes uncovery of similar immune system dysfunctions in ME/CFS patients and cancer patients opened the door to anti-cancer drugs.

Now the discovery of a retrovirus opens the door to anti-retroviral drugs. Some of these drugs come, however, with a considerable downside - potentially devastating side effects - and may offer a viable solution only for a few. The WPI will be assessing the effectiveness of antiretroviral drugs in some ME/CFS patients. Dr. LeGrice of HIV/AIDS and Cancer Virology at the NIH stated that despite its retroviral roots XMRV is different enough from HIV that new kinds of drug will be needed.
The WPI has displayed, however, considerable optimism regarding the creation of new drugs to treat this infection stating One wonders if their optimism derives from the fact that the XMRV virus is much more primitive than the HIV retrovirus.


"Has science found the cause of ME?" independent

Sponsored Features Sliding Teaser - Narrow:

Hope at last for ME sufferers

Thank you, thank you, thank you for your report headlined "Has science found the cause of ME?" (9 October). This is the news that thousands of ME sufferers and their families have been awaiting for so long.

I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria. After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.

How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is.

Rosey Lowry

Bury St Edmunds, Suffolk

The news of a possible scientific breakthrough in understanding ME is most welcome, though it needs to be treated with caution until replicated. If the research does prove to be a breakthrough, it will not be before time. As your leader so rightly points out, people with ME have suffered the most shameful neglect for far too long.

Action for ME has been calling for research into this disabling condition for over 25 years. The barrier has always been the prevalent but unproven theory that ME was psychosomatic. Now, with the publication of the US data, it is time to cast off the past and tackle research with the whole-heartedness such a debilitating and life-destroying illness deserves. It is not just money that is needed, but a new mindset on the part of doctors, researchers and government alike.

Clare Francis

President, Action for ME

London W8

What happens now that 95 per cent of the study group of myalgic encephalomyelitis sufferers have been found to have antibodies to the highly contagious retrovirus XMRV, and 65 per cent tested positively for it?

Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?

Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary? Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics? Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?

This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long.

Hilary Patten

Frome, Somerset

CFS in the news

Advertisement: "In the past 12 months, worldwide there have been 261 articles published in the peer-reviewed medical literature about chronic fatigue syndrome (CFS); there are 4,655 articles about CFS listed in PubMed.

The article published last week in the journal Science linking CFS and xenotropic murine retrovirus (XMRV) has received sustained international media attention. Even with a discovery as important as this one, it will be subject to various interpretations and will likely prompt numerous attempts to replicate the finding, the basis of “the scientific method.”

“Understanding Risk: What Do Those Headlines Really Mean?”

Every day in the newspaper or on television we see stories about new medical findings. Perhaps we hear that a certain drug causes a 300% or three-fold increase in strokes. That’s a large increase—it sounds scary. But, if you know that in every 10,000 people not taking the drug, there are two strokes, then a three-fold increase really only means six more strokes. Maybe that’s not quite so frightening. It’s also confusing that sometimes stories seem to report opposite results—a new vaccine prevents a devastating infection, or it doesn’t. How are we to make sense of such stories? How do we know what to believe?

Fact sheet from the
National Institute of AgingThis fact sheet ("

Saturday, October 10, 2009

Does a virus cause ME?

Does a virus cause ME?: "The front page of today’s Independent asks whether scientists have found the cause of ME (myalgic encephalitis), also known as chronic fatigue syndrome (CFS). The newspaper reported that researchers have found a “strong link” with a retrovirus called XMRV.
This study compared blood samples from 101 CFS patients with samples from 218 people without it. It found evidence of the XMRV virus in about two-thirds of the people with CFS and less than 4% of people without the disease.
These findings alone do not prove that the virus causes CFS, because they do not show whether the infection occurred before or after CFS developed. The research paper is cautious in its conclusions, saying that XMRV “may” be a contributing factor to CFS, but the opposite may also be true: CFS may make people more susceptible to infection with this virus.
Despite these limitations, these findings will be of interest to the research community, doctors, and patients. Larger studies and research that establishes whether the XMRV infection occurs before or after the onset of CFS will be needed before any conclusions can be drawn."

Friday, October 09, 2009

Whittemore Peterson Institute - XMRV

“This is the breakthrough that we have been hoping for. Now we have
scientific proof that this infectious agent is a significant factor in
ME/CFS,” said Annette Whittemore, founder and president of WPI and
mother of a ME/CFS patient. “Patients and their doctors will soon have
a blood test to verify their diagnosis and provide the answers that
they’ve been seeking.”

Daniel Peterson, M.D., medical director of WPI added, “Patients with
ME/CFS (XAND) deal with a myriad of health issues as their quality of
life declines. I’m excited about the possibility of providing patients
who are positive for XMRV a definitive diagnosis, and hopefully very
soon, a range of effective treatments options.”

Information relating to XMRV associated neuroimmune disease can be
found at Those with XAND (ME/CFS) and/or
fibromyalgia, interested in participating in research studies to
further the development of diagnostic tests, should complete the
questionnaire available at

The Center for Molecular Medicine, now under construction, at the
University of Nevada School of Medicine in Reno, is the future home of
the Whittemore Peterson Institute.

“We’re excited about the opening of our new facility next summer,
which will not only add thousands of square feet to our existing
laboratory space, but will also provide new space for comprehensive
patient care,” added Whittemore.

Whittemore Peterson Institute - XMRV: "We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.
As National Academy of Sciences member and expert retrovirologist, John Coffin wrote in the commentary accompanying our landmark publication in Science 'One New Virus-How many Old Diseases'. We look forward to translating this discovery into treatment options!"

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is a debilitating disease
of unknown etiology that is estimated to affect 17 million
people worldwide. Studying peripheral blood
mononuclear cells (PBMCs) from CFS patients, we
identified DNA from a human gammaretrovirus,
xenotropic murine leukemia virus-related virus (XMRV),
in 68 of 101 patients (67%) compared to 8 of 218 (3.7%)
healthy controls. Cell culture experiments revealed that
patient-derived XMRV is infectious and that both cellassociated
and cell-free transmission of the virus are
possible. Secondary viral infections were established in
uninfected primary lymphocytes and indicator cell lines
following exposure to activated PBMCs, B cells, T cells, or
plasma derived from CFS patients. These findings raise
the possibility that XMRV may be a contributing factor in
the pathogenesis of CFS.

Journal: Science [Published on-line as a Sciencexpess Report: October 8, 2009]

Authors: Vincent C. Lombardi [1*], Francis W. Ruscetti [2*],
Jaydip Das Gupta [3], Max A. Pfost [1], Kathryn S. Hagen [1],
Daniel L. Peterson [1],Sandra K. Ruscetti [4], Rachel K. Bagni [5],
Cari Petrow-Sadowski [6], Bert Gold [2], Michael Dean [2] Robert
H. Silverman [3], Judy A. Mikovits [1†]

Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia

Xenotropic murine leukemia virus-related virus - Wikipedia, the free encyclopedia: "Xenotropic murine leukemia virus-related virus, sometimes shortened to Xenotropic MuLV-related virus (XMRV) is a newly identified and provisionally named gammaretrovirus which may be involved in the pathology of familial prostate cancer and chronic fatigue syndrome. Its name refers to its similarity to xenotropic murine leukemia viruses, although it does show some substantial differences. It is thought to be linked to prostate cancer by ribonuclease L, part of the cell’s natural defense against viruses. When activated, RNase L destroys RNA in an effort to halt viral gene expression. R462Q is a mutation that results in a decreased level of RNase L function, and this mutation’s presence in prostate tumors shows a strong correlation with the presence of XMRV.

The virus was discovered in cancerous prostate tissues using a microarray containing samples of genetic material from over 1000 viruses. The screen revealed the presence of a gammaretrovirus in a substantial number of the homozygous R462Q cells, but very few of the heterozygous or wild type cells. An expanded screen showed the virus present in 40% of men homozygous for R462Q and only 1.5% of those not, and also demonstrated that each case showed the same virus. [1]In another study, the viral genome was reconstructed from prostate mRNA and used to infect prostate tissues in vitro. The researchers were able to show that RNase L deficient lines were more susceptible to infection.[2] These data do not necessarily show that XMRV causes prostate cancer, but they do show that RNase L deficiency makes prostate tissue more susceptible to the virus. This in turn suggests the possibility of a link between the virus and the disease.

XMRV is even more strongly implicated in chronic fatigue syndrome: people with CFS are 54 times more lik"

Thursday, September 10, 2009

Symptoms then and now - dairy free

Going dairy free over 10 years ago was a turning point for me, before that I was sick every day went to the toilet about 10 tines a day with the runs, was under 8 stone and too tired to hold a hairdryer or climb the stairs plus awful joint and muscle pain, migraines, real trouble thinking and remembering, recurring infections etc etc

The terrible gastric problems improved but I have to be careful, I avoid additives and processed foods, eat very little bread, pastry etc..

Along the way my GP consulted the rheumatology specialist & prescibed nortryptaline which helped me sleep much better.

I have to say if your wife gets a diagnosis of fibromyalgia or chronic fatigue syndrome it is hard to live with as it is mainly considered to be "MUPS" or medically unexplained symptoms and symptoms will probably be treated one by one rather than as part of one syndrome unless she is very very lucky and has a GP who "believes"...

I still have to pace myself very carefully or I wake up feeling like I have swine flu times 10. In fact I am still suffering today from just the extra 1/2 hour picking sloes

Monday, August 24, 2009

The crippling illness that GPs refuse to diagnose | Mail Online

The crippling illness that GPs refuse to diagnose | Mail Online:

"For a long time many doctors saw fibromyalgia as largely a psychological problem, but ten years ago it was recognised as a genuine medical condition by the World Health Organisation. Yet some medics remain sceptical. ‘The problem is that many of the symptoms of fibromyalgia are vague,’ explains Dr Heike Romer, a consultant in pain management in the NHS and at the Spire Liverpool Hospital. ‘Often GPs treat patients’ symptoms separately, rather than looking at them as a group and realising they indicate fibromyalgia. And because these symptoms aren’t life-threatening and the patient isn’t turning green, they are seen as a malingerer.’

Dr Tom Gilhooly, a GP from Glasgow who has worked with fibromyalgia patients for 20 years, believes the current approach to treating the condition is inadequate. ‘Often the patients I see are on a cocktail of drugs. Instead of handing out drugs for the symptoms, we have to get to the underlying cause of the problem.’ Dr Gilhooly believes this cause is an immune system response, perhaps to a virus or trauma - such as an accident - or simply to the body being pushed to its limit."

Wednesday, August 19, 2009

‘Untruths’ about NHS system of healthcare -Times Online

‘Untruths’ about NHS system of healthcare -Times Online: "Sir, The quarter of a million sufferers of myalgic encephalomyelitis (ME) in this country, who can access no effective NHS treatment for their physical illness, might agree with Mr Hannan in that they would not wish their NHS “care” on anybody.

ME has been classified as a physical, neurological illness (alongside MS and Parkinson’s) by the World Health Organisation since 1969. Instead of receiving biomedical treatment, ME sufferers are mixed up with sufferers of other fatigue-causing conditions, including mental ones, under the meaningless umbrella term “chronic fatigue syndrome”. In the UK no other neurological illness is treated solely by psychological interventions.

All UK taxpayers’ research and treatment millions have gone to the psychiatric profession that insist, against all scientific evidence, that it is an “abnormal illness belief”. No funding has ever been allotted to developing a diagnostic test. The parliamentary Gibson report recommended that these psychiatrists be investigated for a possible conflict of interest in also working for large insurance companies. This has never been done. Is healthcare here also, in President Obama’s words, “working better for the insurance companies” than for ME sufferers?
H. Patten
Frome, Somerset"

Tuesday, August 18, 2009

The Life Span Institute at the University of Kansas

The Life Span Institute at the University of Kansas: "Chronic Fatigue syndrome, also called chronic fatigue and immune dysfunction syndrome, describes a serious chronic condition in which individuals experience six or more months of fatigue accompanied by physical and cognitive symptoms. Do not use terms such as Yuppie Flu, malingering, and hypochondriasis as they are pejorative, imply personality disorders, and are not scientifically supportable. Say person with chronic fatigue syndrome."

Sunday, August 16, 2009

I'd rather have cancer, says Alex Wilson-Glab | National News |

I'd rather have cancer, says Alex Wilson-Glab | National News | "Alex has muscle pain, fevers, chills, nausea, severe fatigue and can barely walk from bed to the bathroom.

Alex wants to raise awareness about CFS, which was once known as the 'yuppie flu', saying it is a recognised medical condition and not a psychological disorder.

Alex, who sometimes needs a wheelchair, said one person had died from CFS in Australia and she fears she will be next. 'I don't think I will ever recover completely. It would be better to die because people would listen,' she said.

Aspiring lawyer Alex is doing one VCE subject at Lowther Hall but is so sick she can't attend school.

She will be admitted to the Royal Children's Hospital on Monday for monitoring.

Her mother Jeannie, 56, said the VCAA was refusing to give Alex extra time for her VCE exams. She was furious the medical world didn't recognise the severity of CFS.

'All the goals she has had all her life have been taken away from her,' Mrs Wilson-Glab said. 'Her teenage years have been taken away from her.'

She said they remained positive and the family encouraged Alex to achieve everything she wanted in life."

Tuesday, August 04, 2009

Teenager took his life after suffering years of ill health with ME/CFS

Teenager took his life after suffering years of ill health - Eastbourne Today

Contains: A teenager took his own life after struggling to come to terms
with having ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Guy
Ramsey was diagnosed with the condition when he was 12 and as a result had
to take time off school and was often in pain ... A statement read out on
behalf of Guy's mother, Alison Ramsey, who attended the inquest, explained
that he would often become withdrawn and irritable ... "I said how much I
loved him and how proud I was of him but he said he was fed up and wanted to
get better." ... Assistant deputy coroner Kate Palmer recorded a verdict of

Just too sad, a truly depressing condition with very little help, support or even treatment available for patients with ME/CFS

Tuesday, July 07, 2009

Picasa Web Albums - Danescrest, Brompton, Northallerton - Danescrest, Brompton, Northallerton

"Behind Danescrest, Brompton, Northallerton looking left at the well tended garden area"

Picasa Web Albums - Danescrest, Brompton, Northallerton - Danescrest, Brompton, Northallerton

"Behind Danescrest, Brompton, Northallerton looking right at the eyesore area"

Picasa Web Albums - Danescrest, Brompton, Northallerton - Danescrest, Brompton, Northallerton

What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.

What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.: "These Xenon SPECT scans show pathological brain changes in a 37 year-old female M.E. patient. They show abnormally decreased brain perfusion (blood flow) which decreases further after exercise.

In contrast, a healthy person’s brain would normally show an increase in brain perfusion (blood flow) after exercise. Dr. Byron Hyde from the Nightingale Research Foundation, Canada, believes that every M.E. patient has some kind of abnormal SPECT scan. (Reference page 7, The Nightingale, Myalgic Encephalomyelitis M.E. Definition, 2007 :-"

What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.

What is M.E.? - M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.: "M.E. is a neurological disease(1) and stands for Myalgic Encephalomyelitis.

My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation
It is an injury to the Central Nervous System(2). usually triggered by an infectious disease process, e.g. a virus, or by chemicals over stimulating the immune system(3). It is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems(4).

Prognosis is variable depending on how much and which part of the brain has been damaged(5). Complete pre-illness recovery is rare but possible (around 6% of cases.)(6) Some improvement, even marked improvement (different from full remission) is more likely than complete recovery, although relapses can occur several years after remission(7). Most cases stabilise at varying degrees of disability(8). Around 30% of cases are progressive and degenerative and degeneration of end organs may result in death(9). (One quote of early death rate in M.E. is 10%.This figure includes suicides(10). Early death from cardiac pathology is put at 2%(11). Pancreatic failure can also contribute to early death(12).)

Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise, cognitive problems (such as short-term memory loss and concentration difficulties), muscle and nerve pain, muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to food, alcohol, chemicals and medicines."

Sunday, July 05, 2009

Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog

Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog: "common remedy for bacterial overgrowth in the gastrointestinal system involves antibiotics. Yet antibiotics, paradoxically, are sometimes blamed for setting the stage for bacterial overgrowth in the first place. Many people are not surprisingly skeptical about taking antibiotics because of this. How do you go about ensuring that you’re not just making the problem worse?
Indeed, there have been studies showing that antibiotics have reduced small intestinal bacterial overgrowth (SIBO) and improves a variety of symptoms (including brain-related symptoms) in CFS and fibromyalgia. Yet, these are very small studies of small duration. What happens when the antibiotics are stopped and the patients are followed in the long term? We do not know. Given that antibiotics and overuse of acid-blocking medications set the stage for SIBO, I would be inclined to worry about using antibiotics as a means of clearing SIBO. I would be more inclined to use probiotics and enteric-coated peppermint oil.
There are quite a few different kinds of probiotics on the market that feature different kinds of bacteria. Are there certain kinds of bacteria that may be more helpful for the kinds of gastrointestinal issues that chronic fatigue syndrome (ME/CFS) patients face?
Yes, the benefits appear to be strain-specific. If it is for symptoms that resemble that of irritable bowel syndrome (IBS) then I would suggest 2 strains of bacteria that have been shown to be helpful for gut-related symptoms – Align (Bifidobacteria infantis 35624) and LactoFlamX (Lactobacillus plantarum 299V). In our University of Toronto study, we used a probiotic made by the Japanese company Yakult. The strain, Lactobacillus casei Shirota had been found previously to improve mental outlook in healthy volunteers who had th"

Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog

Dr. Logan on H2S, Fiber and the Gut | Bringing the Heat: An ME/CFS Blog

Explains so many of my symptoms & experiences over the past 35 years. . .

Sunday, June 28, 2009

CDC's AIDS definition successfully challenged - can the same be done for CFS/ ME?

Chimes with the current fight to challenge CDC's CFS definition


It might be of interest to know that the CDC's AIDS definition was successfully challenged in 1993. Below are references to this lawsuit I was able to find on the web.

--Liz Willow

U.S. Is Sued Over AIDS Benefits - The New York Times

By Josh Barbannel
Published: Tuesday, October 2, 1990, New York Times

Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.

According to the suit, the people are being denied benefits even though they have been repeatedly hospitalized for disabling conditions, including gynecological disorders, tuberculosis, heart infections, bacterial pneumonia and kidney failure.

These symptoms are not included in the definition used by the Social Security Administration.

''I've been having strong pains since the last time I have been in the hospital,'' said one plaintiff in the suit, identified in court papers and in an interview only by her intials, S.P.

The Social Security Administration referred calls about the lawsuit to the Justice Department, which said it was unfamiliar with the suit.

At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control in Atlanta to track the spread of the epidemic. That definition has been used, the plaintiffs said, to award or deny Government benefits.

The Federal definition lists a number of ''indicator'' diseases, like Kaposi's sarcoma, a skin cancer. The definition was drawn up after studies of early AIDS victims, often middle-class homosexual men.

Theresa M. McGovern, a lawyer with MFY Legal Services, the lead counsel in the lawsuit, said that so far the Centers for Disease Control had not conducted large studies of the effects of AIDS on women or other groups of patients. She said it was ''irresponsible'' for the Social Security Administration to rely solely on the centers' definition.

The suit seeks to be recognized as a class action representing thousands of women, children, drug users, homeless people and poor people with AIDS across New York State.


S.P. et al. v. Sullivan (Federal Court, New York)

SETTLEMENT CONFERENCE. This lawsuit challenges the Social Security Administration's (SSA) reliance on the Centers for Disease Control's grossly inadequate definition of AIDS for awarding Social Security disability benefits. The SSA regulations challenged here granted disability benefits automatically to anyone with HIV whose doctor certifies that they had one of the opportunistic infections recognized as HIV-related by the CDC. However, the CDC definition did not include many of the diseases which manifest in women, drug users and low-income people. Benefits applicants who were disabled by these non-recognized diseases not only had to provide medical evidence regarding their HIV status but also had to satisfy an additional and very difficult "functional" standard to prove they could not function normally in the work world. In July 1993, the SSA announced new regulations governing disability benefits for people with HIV which address virtually all of the
concerns raised by our lawsuit. The new regulations added the predominant manifestations of HIV in women, drug users, and low income people as criteria by which HIV-infected individuals can qualify for disability benefits. A settlement conference with the Department of Health and Human Services before Southern District of New York Judge Cedarbaum is scheduled for mid-September. Terry McGovern of the HIV Law Project is lead counsel on the case. Other participants include MFY Legal Services, Brooklyn Legal Services, Cardozo Law School's Bet Tzedek Legal Services, and the Center for Constitutional Rights. Suzanne Goldberg is Lambda's attorney on the case.


Sunday, June 21, 2009

Irish Medical Times | Opinion | Belfast-born doctor pushes ME research

Irish Medical Times | Opinion | Belfast-born doctor pushes ME research: "Belfast-born doctor pushes ME researchBelfast-born doctor pushes ME research"

Contains: Belfast-born Dr Derek Enlander has been chosen as the Irish
representative on a new European Think Tank for ME ... The 10-member group
wants to initiate an effective research effort to find the secret behind the
somewhat mysterious disease. “The doctor is [often] skeptical and believes
the patient must be imagining that they are sick. The idea that they can’t
work is because they are lazy or they are neurotic ...

“But this is not a psychiatric disease. This is a physical disease,” he stressed. “It has been
shown that there is a dysfunction of the immune system, and it is this
dysfunction that people are now actually focusing on for treatment.”

... Dr Enlander is highly critical of psychiatrists who believe graded exercise
therapy and cognitive therapy can be effective treatment. “We have found
that graded exercise therapy can actually be detrimental to the patient’s
progress ... most patients have had positive exposure to one of a number of
viruses, such as Human Herpes virus 6 ...

His clinic in Manhattan has devised a protocol based on what is called the ‘Methylation Cycle’ ...latest work involves a diagnostic test using hydrogen sulphide. “Hydrogen
sulphide is not the specific test for this disease, but it is an indicator
of an abnormality.” ... “Scientists have already uncovered a lot about ME,
but this information does not reach professional health care personnel, and
the disease is still not taken seriously,” he commented. “It is about time
this changed.”

Friday, June 19, 2009

A Fibromyalgia Cancer Connection? | Bringing the Heat: An ME/CFS Blog

Oh shit! As we don't have enough to live already. . .

A Fibromyalgia Cancer Connection? | Bringing the Heat: An ME/CFS Blog: "Individuals who reported widespread pain had a greater incidence of subsequent cancer and, after being diagnosed with a malignancy, were also about 80% more likely to die than those diagnosed with cancer who didn’t have a history of chronic pain, Dr. Macfarlane said.
The increase in cancer risk was confined to a few types of malignancies. Breast cancer was roughly fourfold more common in women who previously reported widespread pain than in those without such a history. The rate of prostate cancer was similarly elevated among men with widespread pain. Colon cancer was increased in both sexes.
Deaths due to accidents or suicide were also considerably more common in individuals with widespread pain.
“Is this a chance finding? Well, I think it could be. This is the only such report, but then I don’t think other people have looked,” the epidemiologist said. His report was viewed with dismay by audience members who regularly see patients with fibromyalgia in their offices.
In another study among the 1,163 women with confirmed fibromyalgia, for example, the rate of suicide was nine-fold greater than in the general population, as reflected in Danish mortality register statistics. The suicide rate among the 106 women with possible fibromyalgia was increased 20-fold."

Sunday, June 14, 2009

Whittemore Peterson Institute - Our Mission

Finally! A dedicted research establishment for neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism.

CFS/ Fibro has stolen the best part of the last 18 years of my life.....

Whittemore Peterson Institute - Our Mission:

"The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.

Our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining a blood and tissue repository and a clinical database for ME/CFS and ultimately for other neuroimmune diseases is a primary focus of the Institute.

Our goals include:
To facilitate and advance patient care
Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism
Develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases
To advance and support medical education and physician training"

Wednesday, June 10, 2009

Genetic study finds seven different types of Chronic Fatigue Syndrome

Genetic study finds seven different types of Chronic Fatigue Syndrome: "Genetic study finds seven different types of Chronic Fatigue Syndrome
News - Chronic Fatigue Syndrome News
Written by Matthew Hogg
Tuesday, 06 May 2008

Geneticists have discovered the biological basis for seven different subtypes of chronic fatigue syndrome which correspond with different symptom patterns in patients.

For a long time it has been suggested that not all cases of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), are exactly the same and that there are in fact several subtypes of the disease. This view has been based on research findings which have shown for example that some patients have specific immune system or hormonal abnormalities while others do not.

A new study carried out by researchers at St George's Hospital, University of London, now provides genetic evidence that there are indeed variations of the disease and that these influence the symptoms that predominant in individual patients.

The results of the study are due to be officially presented at a ME/CFS conference in Cambridge, England which is being organised by ME Research UK and the Irish ME Trust.

The study involved 55 ME/CFS patients from both the US and UK along with 75 healthy controls. The researchers took blood samples from all participants and carried out genetic analyses.

Seven Subtypes of ME/CFS

Results showed seven distinct genetic patterns amongst the patients which were linked to specific symptom patterns.

These are:
Type 1 - high levels of depression and anxiety as well as poor sleep and high degrees of pain.
Type 2 - severe post-exertional fatigue, joinjoint and muscle pains.
Type 3 - mildest form of the disease.
Type 4 - moderate levels of body pain and sleep problems
Type 5 - most severe muscle weakness and predominance of gut problems
Type 6 - associated with significant fatigue
Type 7 - most severe form with high levels of pain, swollen glands and headaches.
It was found that types four and six were the most common forms of the condition.

Perhaps unsurprisingly it was found that most of the genetic markers in patients involved the regulation of the immune system. Strong evidence from other studies suggests that the immune systems of patients' remains activated after an initial trigger such as a viral infection. It is suggested that this itself is likely to cause symptoms and results in unbalanced defences which can allow other infectious agents such as bacteria and fungal organisms to cause various infections.

ME/CFS support organizations such as those organising the Cambridge conference are hoping that this information will lead to blood tests which will make diagnosis of the condition much easier and more accurate and will allow for tailoring of treatment based on the particular variant the patient is suffering from. Currently, diagnosis of ME/CFS is based purely on symptomology which is often difficult given that so many symptoms overlap with many other diseases.

Neil Abbot of ME Research UK said: "The discovery of a 'thumb-print' for the illness would be the single greatest advance that could be made because, at the moment, diagnosis is on the basis of a set of vague symptoms association with other illnesses.

"It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone."

Lead researcher Dr. Jonathan Kerr said: "We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment."

Dr. Kerr has been one of the most prominent researchers into the genetics of ME/CFS and is dedicated to developing a diagnostic test and effective treatments for the condition"

The truth about chronic fatigue syndrome?

Personally I do not have the strength to challenge my mainstream health care providers but am continualy being left open mouthed with shock at the bullying, patronising and uterly off hand manner in which I am treated by anyone but my GP...but I think she is afraid to give a definite diagosis, hmmm?????

[Co-Cure] ACT: CFS Patient Groups Cowed By The CDC?
Permission to repost

The only sane and rational response to the evident
failure of the DHHS, CDC and NIH to respond with any sense of urgency to the
public health threat of the epidemic disease Myalgic Encephalomyelitis over the
last 25 years can be found by reading Hillary Johnson’s powerful and forthright
speech titled “The Why” which was presented at the Invest in M.E. London
Conference on May 28th 2009. That is how you address the systemic failure
to address a disease that has destroyed the lives of millions around the globe
– speaking up truthfully and fearlessly about the undeniable facts. I applaud
Hillary for telling it like it is!

I ask all “CFS” patient organizations to read this
speech again and explain why they have not addressed the incriminating facts in
their meek testimonies to the CFSAC. Why are they not exposing the elaborate
web of deceit that ignored the evidence for this epidemic disease, replaced it
with a phantom creation called CFS, branded it as an unexplained illness,
restricted research to the genetics of stress, and cast patients as defective,
inferior human beings? A modern day eugenics program has been revealed in the
words of Reeves himself, and you have little to say that would radically alter
this inhumane and unforgivable state of affairs?

I read your testimonies and see nothing but
suggestions for tweaking this indefensible program. Remove Reeves - but the CDC
will find a similar replacement; make available the CDC’s research data since
1984 - on its phantom creation CFS; request that it abandon its Empirical CFS
Definition - ignoring the preceding false definitions; collaborate with other
researchers and organizations - under the CDC’s self-proclaimed supremacy;
partner with the IACFS/ME - whose conferences still unashamedly promote
psychosocial research, or the CAA - who benefited financially in the branding
of CFS; all calling for more of the same research to nowhere.

Hillary asks if we are more comfortable being
labelled as mental patients, and from the evidence of these testimonies it
appears that our so-called charities would rather let the false “CFS” construct
become more entrenched while millions of dollars are wasted on damaging
psychosomatic theories and not on urgently needed biomedical research. Not one
patient group is standing up for the scientific facts that have overwhelmingly
demonstrated that M.E. is an infectious and inflammatory disease of the central
nervous system, that this was the disease the CDC redefined as “CFS”, that the
disease is being transmitted through us and the blood banks without warning to
the general public, and M.E. patients are dying because of institutionalized medical
ignorance and neglect.

Not one group is demanding a Congressional Inquiry
into the institutionalized denial of Myalgic Encephalomyelitis, demanding that
the DHHS, CDC and NIH recognise the infectious disease M.E., and for the
creation of a definition that addresses the neurological, immune, autonomic,
cardiac and mitochondrial dysfunction together with the known biomarkers of the
disease, or that the CDC renounce its CFS program and alert the public to this
pandemic, or pushing for politicians and human rights groups to urgently
address this evident public health crisis. Not one group will acknowledge that
M.E. is the crisis! What is the gain to these groups by cowing to the CDC’s
“CFS” and not standing up for M.E.?

These groups do not protest against the request forwarded to newly appointed CDC director, Dr. Thomas Friedan, that “CFS activities” be moved from the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch - to the National Center for Chronic Disease Prevention and Promotion, a serious downgrade of priority. Not one group is demanding that the NIH place M.E. at the National Institute for Neurological Disorders and Stroke with a formidable budget - they do not question the CDC’s “CFS” being housed at the Office of Research into Women’s Health, knowing that no neurologist or other specialist will ever hear of the infectious disease Myalgic Encephalomyelitis. Whose side are these groups on?

Sadly, if all these groups and individuals are
content to quietly ask the CDC to tweak its “CFS” program then another
generation will have to fight this battle all over again and those of us beaten
by this terrible disease will struggle to live out our final days of living
hell in misery.
Heroically, the renowned author of 'Osler’s Web' has
spoken publicly and fearlessly about what we now know were outbreaks of Myalgic
Encephalomyelitis and not some “new illness” that the CDC allegedly

Why can’t all patient groups call for truth and justice
for M.E. sufferers with the same fearless voices?

Will anyone hear Hillary’s brave and timely call
for us to be more “radioactive”, before it really is too late?

John Anderson

Tuesday, June 09, 2009


Home - OSLERSWEB.COM: "If you have wondered why there are currently few effective medical therapies for your illness, or why its cause remains unknown, read this book. If you have felt bewilderment when you encountered skepticism from family, friends, employers and doctors after falling ill, Osler's Web will help you understand how the skeptic's view was nurtured by federal health bureaucrats and allowed to become the status quo.

Osler's Web will introduce you to the men and women who first recognized this disease in their medical clinics and, eventually, described the disease in medical journal articles in the middle and late 1980s. You will meet, as well, the scientists and bureaucrats inside the Centers for Disease Control and the National Institutes of Health who attempted to squelch research throughout the 1980s and 1990s, and scientists in elite private institutions who made important discoveries that were buried under a blizzard of propaganda. You will hear the voices of people who fell ill--children and adults--and the voices of their doctors, who struggled to help them.

Veteran reporter Hillary Johnson, who was a contributing editor at Rolling Stone magazine at the time, interviewed more than 500 scientists, doctors and public health officials over the course of nine years to complete Osler's Web. She undertook scrupulous research, traveling to three continents and most major American cities to report on the stunning melt-down that occurred in the scientific and medical communities in the face of this now-widespread disease.

If you are curious about the history of this disease, and are seeking insight into why--twenty-five years after it first emerged as a public health crisis--ME/CFS continues to be controversial, read the new edition of Osler's Web"


Home - OSLERSWEB.COM: " is being introduced in tandem with a new and updated edition of my 1996 book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. A decade ago, Osler's Web was described by one reviewer as 'a relentless, meticulous and highly persuasive expose by a journalist who spent nine years investigating the medical research establishment's failure to take seriously chronic fatigue syndrome.'

In the new update, 'Ten Years Later,' I discuss why the disease continues to be ignored or dismissed as unimportant by the medical profession and why patients continue to be disenfranchised, twenty-five years after a world outbreak of this disabling disease."

Sunday, June 07, 2009

CFS Personal Story/Call for Action

A must read....

When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (2 years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.

But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease. Also known as chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.), it is currently classified under the World Health Organization as a neurological disease. It also affects the immune, endocrine, and other organ systems. The CDC recently acknowledged CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD, and end stage renal failure. CFS also afflicts at least one million people in the U.S. Some estimates have it at over 4 million.

Yet, despite this, CFS is still one of the least funded of all illnesses in the United States. According to the CFIDS Association of America, more money was spent studying hay fever last year than on CFS.

Due to such limited funding and research, to date there are very few treatment options currently available for CFS (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, none have worked, and many made me worse.

I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (3 weeks after onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever was back full blown, and I was out of work for another 3 weeks.

Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground, and though I knew this, I did it anyway. I was of the mind-set that I could push through anything, and that with enough perseverance, I would eventually overcome.

Not so. I learned the hard way (and I am still learning) that CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the CFS world as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was 9 years ago. I have spent what was supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

Lest you think I have merely fallen into some kind of depression or given up, I assure you I have not. I am not depressed, and I still fight to overcome my obstacles every minute of every day. In many ways, I fight harder now than I ever did before. It is for that reason that I write and share this with you today.

As most of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well educated young woman (just 24 years old). I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly 2 months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

Monday, June 01, 2009

Fibromyalgia: Patients say many doctors don't take them seriously - Sacramento Living - Sacramento Food and Wine, Home, Health | Sacramento Bee

Fibromyalgia: Patients say many doctors don't take them seriously - Sacramento Living - Sacramento Food and Wine, Home, Health | Sacramento Bee:

"Asked to describe the seemingly indescribable, to make real the manifestations of a medical condition that some still doubt even exists, fibromyalgia patients often rely on similes of the most wince-inducing sort.
• 'I felt like acid was going through my veins.'
• 'It was like a steamroller ran over me.'
• 'Fatigue like someone's pulled out your battery pack.'
• '… as if someone pinged me with a hammer all over my body.'"

Describing the pain in my elbows "as if someone is sticking needles into my elbows" the Dr solemnly asked " who do you think is sticking pins in you?" . . .if you didnt laugh you would cry - I was just trying to describe the stabbing pains.....

Sunday, May 31, 2009

IACFS/ME 09 Conference: Lifestyle Management

Oh lord! I wish Dr. Carruthers were my doctor!

IACFS/ME 09 Conference: Lifestyle Management: "Dr. Carruthers believes pacing is an essential strategy because the ‘delayed and prolonged’ fatigue in ME/CFS is fundamentally different from the kind of fatigue found in other diseases. Putting them rather low on the ladder of his estimation, he noted that “even the authors of the NICE Guidelines ‘ are (finally) beginning to realize this but unfortunately they still don’t fully understand what this means.'

If I understand him correctly, ‘fatigue’ is part of a complex control system. When we’re too active and our bodies are beginning to suffer, fatigue sets in and causes us to reduce our activity levels. Of course we can override this fatigue command for a time with stimulants or by ignoring it, etc. but once the command is obeyed and we become inactive, the fatigue disappears rather quickly. It’s a very easily learned behavior pattern; do too much, suffer from fatigue; obey the fatigue signal, rest and quickly recover.

That pattern, of course, has just been shredded in ME/CFS. For one, the onset of fatigue is delayed - and what a problem that causes. You can engage in an activity and feel fine and then collapse hours or even days later. Not only that, but because the fatigue state is so prolonged, it’s difficult to tell cause and effect. Was it that activity three days ago or was it something yesterday that made my symptoms so bad today? Or was it because I overdid it three days ago that this minor activity I did yesterday triggered more fatigue today? (Throw in the fact that ‘fatigue’ itself impairs our ability to understand complicated situations and you can see how difficult it is for patients to know – particularly when they’re symptomatic – what has caused what."