What the Experts say about ME/CFS - Margaret - 280306

[Guest guest]

 

Margaret     28th March 2006

 

 

" Biological research into ME/CFS is ignored by the medical

publications " .

 

 

From " What causes (ME)CFS? "   by Professor Komaroff from

Harvard Medical School

 

" The biggest change in our understanding of (ME)CFS over the past 20

years  is the abundant evidence that there are measurable

abnormalities in the body in patients with (ME)CFS.  I conclude that

the controversy as to whether (ME)CFS is real should be over " .

 

" Most studies using MRI of the brain in (ME)CFS have found small

scattered areas of signal abnormality in the brain's white matter (and)

these abnormal findings most likely are active areas of inflammation and

possibly demyelination.  SPECT, PET and fMRI also have generally found

abnormalities " .

 

" Most studies of cognition have found abnormalities in patients with

(ME)CFS. 

Many studies have found abnormalities of the autonomic nervous

system.  A paper published in 2005 found a characteristic

'fingerprint' of specific molecules in the spinal fluid of patients with

(ME)CFS.  Spinal fluid, much more than blood, reflects what's going on

in the brain " .

 

" The abnormalities of the immune system are consistent with an assault

against some foreign invader " .

 

" The symptoms of (ME)CFS are experienced in the brain and I suspect most

of them are caused by abnormalities in the brain, but what causes these

abnormalities? 

Clear possibilities from the literature include

(i) effects of a state of chronic immune activation on the function of

the brain cells 

(ii) a chronic infection of the brain by micro-organisms

(iii) physical injury to the brain. 

A chronically activated immune system as reflected by various blood

tests could reflect one of two possibilities or both:  the presence of

a micro-organism such as a virus (or) a defect in the immune system that

causes it to become unnecessarily activated " .

 

 

From " Fast Facts:  Top Ten Discoveries about the Biology of (ME)CFS "

 

1.      (ME)CFS is not a form of depression and many patients

with (ME)CFS have no diagnosable psychiatric disorder

2.      There is a state of chronic, low-grade immune

activation in (ME)CFS

3.      There is substantial evidence of poorly functioning NK

cells

4.      Abnormalities in the white matter of the brain have

been found

5.      Abnormalities in brain metabolism have been discovered

6.      (ME)CFS patients have abnormalities in multiple

neuroendocrine systems in the brain

7.      Cognitive impairment is common in (ME)CFS patients

8.      Abnormalities of the autonomic nervous system have

been found, including a failure of the body to maintain blood pressure,

abnormal responses of the heart rate and unusual pooling of the blood in

the veins of the legs.  Some studies also find low levels of blood

volume.

9.      (ME)CFS patients have disordered expression of genes

that are important in energy metabolism

10.  There is evidence of active infection with various herpesviruses

and enteroviruses in (ME)CFS patients. Other infections can also trigger

(ME)CFS, including the bacterium that causes Lyme disease.

 

 

From " It's all in the genes "   by Dr Kerr from St 's

University of London

 

" Within the last three years, researchers have reported various gene

signatures in the blood of (ME)CFS patients. We now have data comparing

gene signatures of sudden versus gradual onset and also of resting

status versus post-exercise status.  Certain themes of gene activity

are emerging, of which 'immunity and defence' is the most prominent,

supporting previous findings on the role of the immune system in the

maintenance of this disease.  The 2003 study of et al found

that 4 of 12  PCR-confirmed, (ME)CFS associated transcripts could not

be matched to known genes.  In the near future, we can expect a

diagnostic test for (ME)CFS, an understanding of the mechanisms of the

disease, and treatments that will work in this tragic and all-too-common

illness " .

 

 

In March 2006 the CFIDS Association of America produced a special 65

page issue of its Chronicle (The Science and Research of CFS), which

refers to " the quiet devastation " and " ravages " of (ME)CFS. 

Contributors include respected researchers and clinicians from across

the world with expertise in ME/CFS.

 

 

 

From " The State of (ME)CFS Research " by Professor Klimas from the

University of Miami Medical School

 

" Over the past 18 years, the field has grown in both the number of

researchers and disciplines represented (but) each research finding

seems to raise more questions than it answers.  (ME)CFS is a complex

multi-system illness that has eluded easy answers.  Unfortunately we

still don't have a lab test or other diagnostic tool for (ME)CFS.  The

resulting lack of credibility accorded to (ME)CFS has been a significant

barrier to research and understanding " .

 

" We need more research to understand the various subgroups of CFS and to

discover treatments that address the true biologic underpinnings of this

illness.  We need to educate health care professionals about this

illness and keep at it until every doctor (and) nurse can quote the

diagnostic criteria " .

 

" We know that (ME)CFS has identifiable biologic underpinnings because we

now have research documenting a number of underlying pathophysiologic

processes involving the brain, the immune system, the neuroendocrine

system and the autonomic nervous system " .

 

 

 

From " Across the Pond "   by Brigitta Evengard from The Karolinska

Institute, Stockholm, Sweden

 

" Researchers in centres across the world are investigating everything

from cause to cure.  (ME)CFS is a disease that affects people in every

corner of the world " .

 

Despite recent ill-informed assertions from those who support the

psychiatric lobby that the disorder is unknown outside the " cultural "

beliefs held in the developed countries of Europe, the Special Issue

documents a small sample of research centres in countries that include

Australia, Belgium, Canada, China, Denmark, Germany, Iceland, India,

Japan, Korea, The Netherlands, Sweden, Spain and the UK.

 

 

From " The Link between Advocacy and Research "   by F Sheridan

 

" The Centres for Disease Control's current Director, Dr

Gerberding, has continued to give (ME)CFS personal attention.  In June

2004 she stated: '(ME)CFS is an important and disabling condition and we

must do more to help the public and health care providers understand its

devastating impact' " .

 

 

The Epidemiology section by Professor Leonard et al provides

international prevalence estimates: some examples include Japan (1,500

cases per 100,000); Hong Kong (3,000 cases per 100,000); Australia

(1,500 cases per 100,000); New Zealand (127 cases per 100,000); Brazil

(2,000 cases per 100,000); Netherlands (112 cases per 100,000) and Italy

(9,500 cases per 100,000).  The UK figures vary so widely that they

are of little value, varying from 130 cases per 100,000 to 2,600 cases

per 100,000, the latter figure coming from Wessely et al in 1997.

According to the CDC, as many as 900,000 Americans have (ME)CFS.

 

states: " (ME)CFS is characterised by a pattern of relapse and

remission over long periods of time, making it even more difficult to

assess recovery rates.  Full recovery from (ME)CFS appears to be rare

in adults, with an average of only 5% - 10% " .

 

 

From " Immune System Gone Haywire? "   by Levine from New York City

 

" Six prominent findings from the past 18 years of research:

 

1.      impaired function of natural killer cells

2.      increased numbers of destructive T cells and increased

percentage of T cells expressing activation markers

3.      activation of several pro-inflammatory cytokines

4.      dysregulation of the 2-5A RNase L antiviral pathway

5.      predominance of Th-2 cellular immunity

6.      differential expression of gene markers whose products

cause T cell activation " .

 

" In (ME)CFS there is a shift towards Th-2 predominance (and) there is

also frequent reactivation of latent viruses, another sign of

dysfunction of humoral immunity " .

 

" One of the most exciting has been (the) report of aberrant cytotoxic

activity among (ME)CFS subjects who demonstrate a differential

expression of at least 35 gene sequences compared to matched normal

controls.  The identity of the protein products of these genes

suggests a link to organophosphate exposure " .

 

 

From " On the Frontier:  Some Infections Trigger (ME)CFS in 10% of

Cases " by Dr Lloyd from the University of New South Wales,

Sydney, Australia

 

" Both the UK and Australian studies have shown that the development of

(ME)CFS is independent of psychiatric disorder, and that severity of the

acute illness is a key predictor of the subsequent development of

(ME)CFS " .

 

 

From " Is (ME)CFS a Brain Disorder? "   by Dr Gudrun Lange from New

Jersey Medical School

 

" Most researchers now acknowledge that the central nervous system –

the brain and spinal cord – somehow plays a role in (ME)CFS " .

 

" Neuroimaging study results:  Investigators have used brain imaging

technology to examine whether people with (ME)CFS have structural and /

or functional abnormalities.  Both have been found.  Three studies

found evidence of cerebral atrophy.  This means the brain has

decreased in size, possibly due to the death of brain tissue.  Our

group found indirect evidence for white matter loss, and two studies

reported a significant reduction in cerebral gray matter.  Numerous

dynamic imaging studies have now shown reduced cerebral blood flow,

called hypoperfusion, in (ME)CFS patients.  Reduced cerebral blood

flow has been found globally as well as in the lateral frontal, lateral

temporal and medial temporal lobes.  The research suggests that

(ME)CFS patients suffer widespread cerebral hypoperfusion " .

 

" A 2005 study found that 30% of (ME)CFS patients had higher protein

levels and / or white blood cell counts in spinal fluid than normal,

suggesting that this subset of patients may suffer from central nervous

system immune dysfunction " .

 

 

From " Aspects of the Illness:  Alphabet Soup "   by Dr Dedra Buchwald

from the University of Washington

 

" Every patient with (ME)CFS knows about overlapping conditions. 

FM.  IBS.  MCS.  TMD  (which) makes diagnosis and management

harder for physicians.  It also complicates life for patients, who

must deal with scepticism from the physicians, family members and

friends who find it hard to believe that someone with so many ailments

isn't a hypochondriac, depressed, or eager to assume the sick role to

get attention " .

 

" In fact, research suggests that it may be rare for an (ME)CFS patient

not to have concurrent symptoms of other illnesses, and some patients

receive formal diagnoses for multiple conditions " .

 

" This doesn't mean that these are all the same illness masquerading

under different names " .

 

" Irritable bowel syndrome occurs in 58-92% of (ME)CFS patients " .

 

With regard to multiple chemical sensitivity, 53-67% of (ME)CFS patients

report a worsening of their illness with exposure to various chemicals

and 55% of FM patients experience symptoms consistent with MCS " .

 

" Attributing unexplained clinical conditions solely to psychological

distress or psychiatric explanations is no longer widely accepted " .

 

" It seems highly probable that overlap among unexplained clinical

conditions is due, in part, to the complex interplay between genes and

the environment " .

 

" As a final caveat, describing an illness an unexplained should not be

taken to mean unexplainable or imaginary " .

 

 

From " Clinical Care for (ME)CFS " by Marcia Harmon from the CFIDS

Association of America

 

" The fact that very few physicians specialise in the care of (ME)CFS

patients and can contribute to the body of knowledge on clinical care

has slowed progress. Coupled with (this) is the growing recognition that

there are subsets of (ME)CFS patients, and what works for one set of

patients may be of little benefit to another group " .

 

" Because (ME)CFS is such a complex multi-system illness, clinicians

agree that integrative care is a desirable model.  Achieving that

ideal is problematic, because there are so few specialists who know

enough about (ME)CFS to contribute to the team " .

 

" A physical therapist who doesn't understand (ME)CFS is worse than none

at all " .

 

" (Dr ) Bell (paediatric ME/CFS specialist from New York) says

'referring patients to someone who doesn't understand (ME)CFS is

frequently a disaster " .

 

" (Dr Dan) also has difficulty finding knowledgeable

specialists, believing this is just one more reason that the Centres of

Excellence concept is so appropriate for (ME)CFS care.  Even after

more than twenty years in the field, he says: 'I can't possibly

understand everything there is to know about (ME)CFS.  It's just far

too complex and multisystemic.  The pathophysiology is just too

complicated to make it amenable to primary care'.  The other

clinicians on our panel agree that Centres of Excellence are needed " .

 

 

(Note: this is in direct contradiction to Wessely's dictum that pervades

the UK, {and beyond} namely: " We see no reason for the creation of

specialist units " ;  " We do not think that specific guidelines on the

management of CFS should be issued for general practitioners " and " We

believe that the majority of cases can be managed satisfactorily in

primary care " .  Ref: Joint Royal Colleges' Report CR54, 1996. 

Whereas Wessely is deeply reviled by many in the UK ME community, by

contrast, Dan has a depth of compassion and has dedicated his

life to helping (ME)CFS patients and they love him for it).

 

 

" Pharmacological approaches have failed to resolve (ME)CFS.  As

Straus, MD, says in a 2004 JAMA article: 'No drugs prove to

ameliorate the core feature of (ME)CFS: physical and mental fatigue so

profound and oppressive that the term fatigue seems inadequate to

describe it' " .

 

" Dr , professor at the University of Illinois at Chicago,

explains: 'Losses with (ME)CFS are profound, multifaceted and not

limited to social, economic and functional losses' " .

 

" One of the most controversial treatments for (ME)CFS is cognitive

behavioural therapy (CBT).  Some patients are fiercely opposed to it

because they believe it suggests that if they'd just change their

behaviour or their attitudes about the illness, they would get

better.  This opposition has been strengthened by the British approach

to CBT " .

 

" 'I don't take the British point of view that CBT is the one thing you

can do to effectively treat (ME)CFS' says (Professor) Klimas.  Lapp

agrees.  'In my opinion CBT is widely but unfairly maligned because of

the British approach, which presumes that (ME)CFS has no organic basis

and is therefore contradictory to current science.  This type of CBT

assumes somatic symptoms are perpetuated by errant illness beliefs and

maladaptive coping'.  Bell (says) 'It won't suddenly make patients

better'.  says he's 'not convinced of the efficacy of CBT' " .

 

" The bitter, unpalatable reality is that (ME)CFS patients can be

pro-active, they can have a good attitude, they can try various drugs

and non-drug interventions, and they can still remain ill, even

profoundly disabled " .

 

 

 

From " Fast Facts:  A New Definition of Exercise "   by Dr

Snell from University of the Pacific

 

" It's somewhat ironic that for an illness where patients are often

diagnosed as deconditioned and characterised as lazy, exercise

exacerbates symptoms rather than relieving them.  Well-meaning health

care professionals often recommend aerobic exercise as a cure-all for

the symptoms of (ME)CFS without fully understanding the potential

consequences of their prescriptions.  As anyone with (ME)CFS who has

attempted to 'get fit' using traditional approaches to exercise knows,

the results can be devastating " .

 

 

From " Patient Perspectives "  by Bernard (the 12 year old son of

two physicians)

 

" (ME)CFS is not death, but it takes your life away.  It's very

limiting.  It engulfs you in uncertainty because it's so

unpredictable.  With (ME)CFS, you never know what the outcome will

be.  It can change your life forever " .

 

 

 

The CFIDS Association Special Issue costs $12 and can be obtained by

telephoning (from the UK)

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