Saturday, February 27, 2010

Another CFS Blog

 







Look to the End

 
(excerpts)
 
Since Science magazine published the XMRV research by the WPI, National Cancer Institute and the Cleveland Clinic there have been several attempts to cast doubt on the quality of that research.

It seems a strange way to conduct science when the quality of the research and the methods employed to perform the XMRV research are seemingly portrayed as having been carried out by a couple of amateur scientists and published by a school magazine.

It needs to be re-stated that the original XMRV research was carried out by organisations and researchers that are professional and expert in their processes, procedures and knowledge. It also needs to be re-stated that the work was a culmination of years of work and underwent a rigorous six month peer review process by Science magazine before it was published.

... Firstly it would be prudent to look at some of the names in these recent UK and Dutch trials. Professor Simon Wessely's name appears in the author list of the Imperial College study. Professor Wessely is well known for his comments on ME.[4]

... The haste with which these recent XMRV studies have been arranged and, more importantly, been published is significant. Contrast them with the painstaking research performed by the WPI, NCI and Cleveland clinic and the protracted and very stringent validation of that research by Science magazine before it was published.

... However, patients have already been warned to expect negative results by Drs. Nancy Klimas and David Bell as the first studies are being published. 

These first studies have used different methods when trying to validate their tests to detect XMRV in blood samples from CFS patients. The patient cohorts are also suspect.

... The quality of the WPI, NCI and Cleveland clinic cannot be doubted.

Invest in ME does have doubts about research being hastily completed by persons who are known to hold ME as a behavioural illness.

Invest in ME warn patients against being disheartened by those who seem to wish to discredit the WPI/NCI/Cleveland research.

... The true replication studies are yet to come. These are early days still.

Look to the end.

References:

1] http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519

2] http://www.retrovirology.com/content/7/1/10/abstract

3] http://www.bmj.com/cgi/content/full/340/feb25_1/c1018

4] http://www.investinme.org/Article-130%20Williams%20Hooper%20Wesselys%20Ways.htm

5] http://www.ppaonline.co.uk/download/Invitation_Booklet_NCCCFSME%202007.doc

6] http://www.cfids-cab.org/rc/Knoop-2.pdf

Further Links:

The WPI comments on the two UK studies can be seen here http://wpinstitute.org/news/news_current.html -

Expert opinion discussing this latest study by a virology professor can be found here -

http://www.virology.ws/2010/02/15/xmrv-not-found-in-170-additional-uk-chronic-fatigue-syndrome-patients/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+VirologyBlog+%28virology+blog%29&utm_content=Google+Reader

In order to get an idea how several experts discuss XMRV and CFS there is a free 3-week trial to join the Faculty of 1000 Biology and gain access to expert opinion - see http://f1000biology.com/guardpages/evaluation/1166366//article/article.asp%253Fid%253D1166366%2526view%253D%2526style%253D

Magical Medicine: How to Make a Disease Disappear - click here

The Proof is Out There -  Research into ME - click here

 
 
 
 
 
 
 

Response to "Playing a Weak Hand Well"

I have created a blog on this (and sent the text to Co-Cure):

Here is the URL for the blog (which most people can't access, which stinketh):

http://cfsknowledgecenter.ning.com/profiles/blogs/who-is-suzanne-vernon

And here is what I sent to Co-Cure (same text):

I was stunned to read the essay, "Playing a Weak Hand Well," by Suzanne Vernon, scientific director of the CFIDS Association of America, published by Co-Cure on 27 Feb 2010 [http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1002d&L=co-cure&T=0&F=&S=&P=7879].

Vernon writes,

"Use of the less-restrictive Oxford criteria may be objectionable by current standards, but samples were collected before publication of either the Fukuda research criteria (1994) or the Canadian clinical definition (2003)."

True, the Oxford definition predates the Fukuda definition. However, it was published as a counter-argument against the HOLMES definition of 1988, that defined "chronic fatigue syndrome" in the first place. Unlike Holmes, the Oxford definition permitted NO physical symptoms, and included major melancholic depression.

The Fukuda (1994) definition was a revision of the Holmes definition, and bears much more in common with Holmes than it does Oxford.

Why choose Oxford over Fukuda? Only if you accept the dogma of the British "biopsychosocial school" of medicine. Proponents of the Oxford definition believe that the symptoms of Chronic Fatigue Syndrome are actually due to deconditioning. They believe that patients with CFS possess "inappropriate illness beliefs." Something has caused them to think they are sick when they are not - perhaps a bad experience with a virus that has long disappeared, or perhaps "coddling" (as White would put it) by family, friends, and physicians. The "cure" is ten weeks of Cognitive Behaviour Therapy (CBT, a particular type of psychotherapy) to convince the patient she is not really sick at all, followed by ten weeks of Graded Exercise Therapy (GET), to return the patient to work or school.

This belief system (and the biopsychosocial school of medicine can only be called a belief system) has resulted in no medical care for patients with "CFS" or M.E. in the UK, except psychological therapy and required exercise. If a patient cannot complete the exercise program, she is credited with "quitting." While the proponents of CBT and GET claim that it is the only therapy known to help patients with "CFS" or M.E., careful examinations of the studies shows that the short-term positive results reported in the studies were weak, and in the long term, patients were either no better off or actually worse off.

In the UK, the psychiatric version of "CFS" and M.E. has resulted in patients being "sectioned" - sent to psychiatric hospitals against their will. According to the 25% group, an organization of the sickest M.E. patients, many victims have been sent into those hospitals able to walk, but returned in a wheelchair. Fear of being forced into a mental hospital has led to the sickest M.E. and "CFS" patients in the UK being unable to attend clinics at all - even for other reasons - for fear of being sent away. This outcome must be decried in the sharpest language, not supported.

Proponents of the Oxford definition: Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder (among others) have served as paid consultants for the CDC's CFS program too often, and the CDC has sharply been criticized for this. Is it too much to ask that the organization considered the "main" national organization for Americans with M.E. or CFS at least recognize the existence of the CDC definitions over that of psychiatrists who favor, for example, the diagnosis of "factitious illness"?

The concepts of "factitious illness" and "factitious illness by proxy" (which has replaced the discredited Munchausen's Syndrome by Proxy) are not currently used in the U.S. to put adults in mental hospitals - but they are being used in a frightening number of cases to separate school-aged victims from their families and place them in foster homes, where their doctors' instructions are ignored.

I was also shocked by the gratuitous negative reference to Elaine DeFreitas' work. Certainly the description here is controversial. Vernon wrote:

"Back in 1991, Elaine DeFreitas, PhD, and colleagues published in the prestigious Proceedings of the National Academy of Sciences that they had detected retroviral sequences related to human T-lymphotropic virus type II (HTLV-II) in two-thirds of 31 CFS patients, compared with zero positive findings in 20 controls. This report was not confirmed by other investigators who found the same rate of these HTLV-II-like sequences in controls and CFS cases and the search for viral markers chilled for several years thereafter."

According to Hillary Johnson (Osler's Web) and others, the CDC did the same thing with deFreitas' work that the British psychiatrists are trying to do with the Whittemore-Peterson Institute/National Cancer Institute/Cleveland Clinic research (the "Science" study) - they claimed to conduct a study to see if the research could be replicated, but they did not duplicate the methodology. Similarly, the CDC would claim to be unable to find HHV-6 (or its Variants, A and B), in a study where they used the wrong reagents.

From my perspective, there is a line in the sand. The reseach conducted by the proponents of the Oxford Definition is unethical and strongly lacking in rigor. Similarly, much of the behavior of the CDC with regard to "CFS" has been unethical and strongly lacking in rigor.

This is what the CFIDS Association of America supports? It is a sad day for patients, because we have no other truly national organization. Perhaps this will propel the state organizations (who maintain close ties with their base and - unlike the so-called national organizations - accept criticism) to create an umbrella organization that can speak for us all.

Finally, A REPLICATION STUDY REQUIRES THAT BOTH THE DATA SET AND THE METHODOLOGY BE THE SAME. That has not been true of ANY of the three attempts to "duplicate" the "Science" study linking XMRV to CFS. Knowing that her audience consisted of laypersons who might not understand the difference between "duplication" and "replication," Dr. Vernon, as a scientist, should have made the difference clear in her essay. I remain confused as to why she did not.

Time will tell whether the "Science" study will be replicated - but there has yet to be a true replication study published. I can understand why British psychiatrists would want to squelch the suggestion that 2/3 of patients diagnosed with "CFS" actually harbor a retrovirus (which leads to immune defects and consequent chronic infections) - but why would the scientific director to the CFIDS Association of America?

Anyone who sides with the Oxford definition over Holmes; anyone who would reach back to denigrate the Elaine DeFreitas retroviral study, which died for lack of funds; and anyone who would fail to spot an obviously false replication study DOES NOT SPEAK FOR ME.

Mary M. Schweitzer, Ph.D.
 




 

Bad science fails to cast doubt on XMRV research

 
Permission to repost



Bad science fails to cast doubt on XMRV research

Absence of evidence is not evidence of absence – those speculating on the failed XMRV
studies and claiming they cast doubt on the Science paper should understand the
difference between exact replication studies and 'quick and dirty'
approximation studies that did not replicate the exacting protocols
employed by
the Whittemore Peterson Institute, National Cancer Institute and Cleveland
Clinic.

Information from the Science paper discloses the very strict criteria and additional tests
used to characterise severely affected neuro-immune "CFS" patients, while the
approximation studies used loose "chronic fatigue" criteria that were
influenced by psychiatrists and fail to distinguish between neurologically
impaired patients and those suffering chronic fatigue from a variety of causes
.

These approximation studies only prove the failure to use precise scientific
replication methodology and therefore have no bearing on the status of XMRV
infection in "CFS" patients and the 4% positive population controls. The Science
paper stands and ongoing scientific research is being conducted to replicate
the findings and clarify the relationship between XMRV and human disease.

The Department of Health and Human Services is conducting studies on the prevalence of XMRV in the blood donor population and whether it is transmitted by blood transfusion, WPI is conducting a study on blood transfusion recipients, and the National Cancer Institute is studying models of mouse retroviruses that cause cancer and neurological disease, and potential anti-XMRV treatments. Furthermore Prof. Malcolm Hooper's press release "Magical Medicine", his formal complaint to the Minister for Science overseeing the MRC and letter to the Chairman of NICE, including a 442 page report of an extensive and fully referenced review of the literature on ME - which casts serious doubts about the psychogenic model of 'CFS/ME' filtered to the media - have significant medico-legal consequences. 
 
 
 
 

Why no one else is finding XMRV (by Dr. Ralph)

The latest comment on XMRV research - the Dutch XMRV study


As many of you here will know, when Lombardi et al was published in Science
back in October 2009, two documents were published widely on the Internet
simultaneously and are available via the Action for ME website.

The first Science Express Report (that appeared in Science) giving details
of the study does indeed not state that patients were selected using the
Canadian Criteria.

However, in the second document entitled Supporting Online Material it does
clearly state that patients were selected using the Canadian Criteria and
Fukuda.

Taken from the Lombardi et al supporting materials document..

<snip>

Patient samples. Banked samples were selected for this study from patients
fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1)
and the 2003 Canadian Consensus Criteria for Chronic Fatigue
Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe
disability. Samples were selected from several regions of the United States
where outbreaks of CFS had been documented (S2). These are patients that
have been seen in private medical practices, and their diagnosis of CFS is
based upon prolonged disabling fatigue and the presence of cognitive
deficits and reproducible immunological abnormalities. These included but
were not limited to perturbations of the 2-5A synthetase/RNase L antiviral
pathway, low natural killer cell cytotoxicity (as measured by standard
diagnostic assays), and elevated cytokines particularly interleukin-6 and
interleukin-8. In addition to these immunological abnormalities, the
patients characteristically demonstrated impaired exercise performance with
extremely low VO2 max measured on stress testing. The patients had been seen
over a prolonged period of time and multiple longitudinal observations of
the clinical and laboratory abnormalities had been documented.

</snip>

The Kupperveld et al study failed to give this sort of detailed outline of
the patients they chose to use samples from.

In a Statement published today, it was asserted that Kupperveld et al
appeared not to know about the use of the Canadian Criteria because it
probably wasn't mentioned in the paper that appeared in Science.

Well, if Kupperveld et al couldn't be bothered to read all the detail of the
Lombardi et al study that they were supposed to be comparing their own study
with then it would seem to me that there was an element of incompetence on
the part of Kupperveld et al in not bothering to read what they should have
been reading. Further evidence of this assertion could be that the patients
selected for the Kupperveld et al study decided to use the "broad" Oxford
Criteria instead.

Kupperveld et al did not validate their test against samples from CFS
patients known to be XMRV positive.

This was in spite of the fact that the WPI and Judy Mikovits have been
offering to share their work with anyone interested in replication research.

Kupperveld et al did not carry out their study using at least 100 patients
defined using both Fukuda and the Canadian criteria for all their subjects.

Kupperveld et al only carried out a non-validated PCR test using 25% of the
methodology employed by Lombardi et al in a study that took two and a half
years to complete.

In spite of all of this, there have been assertions that this study from
Kupperveld et al together with the two other UK studies that also had
multiple and similarly significant flaws, constitutes the casting of yet
more serious doubt on the original Lombardi et al paper.

There have been assertions that reputable laboratories were used but this is
not the issue of concern.

What matters is what brief these laboratories were given i.e. not to bother with replication - not to bother with validation of their test via the
sharing of samples from the initial Lombardi et al study and not bothering with testing *any* *sample* by *any* *other* method than basic PCR - a testing method that Judy Mikovits has already stated in various lectures and web casts is potentially unreliable in relation to finding XMRV in patients with CFS and ME.

However, if there is an intention to bury any association between XMRV and CFS and ME then the best way to bury that association would be to "crush" it under multiple "quick and dirty" non-replication research studies that do not bother *in* *any* *way* to even try to replicate Lombardi et al i.e. to
look at the samples as closely and as hard and with the care and precision
as the original scientists did - scientists who spent two and a half years
on their work to make the pioneering findings that they did in three centres
of reputed excellence across the USA.

So in closing, we have now had three "post Lombardi et al" studies - 2 in
the UK and one in the Netherlands.

None of them bothered at all to replicate Lombardi et al.

None of the three studies used Fukuda *and* Canadian criteria to
specifically select *all* their patients using the detailed outline of
patient selection given in the Lombardi et al paper (see above).

None of the three null studies validated their test against samples from CFS
patients already known to be XMRV positive.

None of these three studies even conceded that there is a growing population
of CFS XMRV positive patients across the world including in the United
Kingdom.

None of these three studies made any attempt to carry out the full range of testing methods specifically used by the Lombardi et al research i.e.

a) PCR on nucleic acids from un-stimulated and stimulated white blood cells;
b) XMRV protein expression from stimulated white blood cells;
c) Virus isolation on the LNCaP cell line; and
d) A specific antibody response to XMRV.

(Note: It should be emphasised that all four methods were needed for very good reasons and not just for the sake of wasting time and money.)

The simple fact is - thus far there is no emphatic evidence *anywhere* to
state no association between XMRV and CFS and ME.

On the other hand there is emphatic evidence of three "quick and dirty"
non-replication studies from teams who decided for whatever reasons not
obtain any samples from the Whittemore Peterson Institute from known XMRV
positive CFS patients meeting both the Fukuda and Canadian criteria.

All three studies did no precise replication any of the Lombardi et al
study.

Yet all three studies obtained significant and totally co-ordinated 0%
outcomes and publicity across the International media with the sole
intention of casting "serious doubt" on the original study published in
Science during October 2009.

Those in the profession of liaison psychiatry and Governments pursuing CBT/GET agendas (i.e. the PACE Trial in the UK) with vested interests in finding a 0% association between XMRV and CFS are the only people currently benefiting from "quick and dirty" 0% non-replication findings.

The jury is therefore still well and truly out.

Sincerely,

Stephen Ralph DCR(D) Retired.

http://www.meactionuk.org.uk


* * *
In other words, "we can't find it" is not the same as "it's not there".

This was the problem 20 years ago with Elaine DeFreitas' virus -- the "replication" study was intentionally done wrong, repeatedly, because they didn't want to find anything to contradict Straus' stance that we're all depressed menopausal women.
You won't find what you're not looking for. I was tested for things that should have been normal, and when they were, I was told "there's nothing wrong". The tests that should have been abnormal weren't done. The doctor wanted to see a depressed divorcee and did the bare minimum testing so he could document what he wanted to see. When I specifically requested a cortisol test, which would be off in one direction for CFS and in the other direction for depression, it wasn't ordered. The only reason to refuse was that his ego would suffer if it proved that I was right and he was wrong.
Several years later, I had a C-Reactive Protein test, which shows infection/inflammation without identifying the exact cause. The results were "sky high", "off the charts" according to that doctor. He found what he was looking for; my previous doctors had not found what they weren't looking for.

Housing for the Disabled



I've previously fowarded the National Council on Disability (NCD) recent
housing report. However, it was in PDF format.

I received this today and found the first link revealed a report with each
subsection available through weblinks, making reading relevant information
much easier.

And there is some discussion going on! The US Department of Housing is
listening.

Also of note are the links to two media reports.

--Liz Willow


From NCD: Housing Report

On February 23, NCD, along with the University of Illinois at Chicago and
Access Living, held an event highlighting the release of NCD's housing
report, The State of Housing in America in the 21st Century: A Disability
Perspective, in Chicago, IL. Chicago Public Radio highlighted the event that
morning http://www.chicagopublicradio.org/Content.aspx?audioID=40211 and it
was covered by Medill Reports Chicago that evening.

The report offers a comprehensive overview of housing and answers important
questions about the current housing options for people with disabilities
living in the United States. The NCD report is one of the most comprehensive
national studies of housing for people with disabilities. NCD's Chairperson
and First Vice Chairperson, Linda Wetters and Pat Pound, met with
stakeholders the day before the event to discuss ways to use the report to
implement new strategies to open up housing opportunities for people with
disabilities. Lynne Grosso, Director of Enforcement, U.S. Department of
Housing and Urban Development, responded to NCD's recommendations at Tuesday's
events. The publication includes detailed reports in several areas of
affordable, accessible and integrated housing.

For more information about the housing report, please contact Joan Durocher
at jdurocher@ncd.gov .

------

Two of the links to my previous post on NCD's Housing Report do not show up in that post.
Here they are:
The Merrill news story can be found at
--Liz Willow



Friday, February 26, 2010

Those Unsinkable Rubber Ducks

Those Unsinkable Rubber Ducks :

a selection of rapid responses to Santhouse et al, Chronic fatigue
syndrome BMJ 2010; 340: c738
(http://www.bmj.com/cgi/eletters/340/feb11_1/c738 )

Greg Crowhurst Feb26th 2010


"The advent of every major juncture in man's understanding of himself
and his environment, every staging post on the journey of knowledge
that we all have the right to call science, was heralded by the sounds
of scoffs and guffaws. In the words of the German philosopher Arthur
Schopenhauer, 'All truth passes through three stages. First it is ridiculed. Second, it is violently opposed. Third, it is accepted as self-evident."(p5)


This observation from Christopher Brookmyre's "Attack of the
Unsinkable Rubber Ducks"(Abacus 2007) is directed at those who keep on
believing in a theory, like the psychosocial theory of ME, despite all
the evidence to the contrary.

The "unsinkable rubber duck" principle is this : Whenever you think
you have sunk them, they just bob back up again, like Santhouse et al
, in their recent BMJ editorial Chronic fatigue syndrome BMJ 2010;
340: c738 , a "textbook example of group-think," which relies upon
"the asssumption that any differences within the CFS population are of
no clinical significance", that CFS is an entity with no ongoing
pathology such as infection," ( Goudsmit )."

"What I don't see ", said Goudsmit ("Why do doctors refuse to believe
patients?" ) "is an impartial, evidence-based approach.. ….I see an
'obsession' with CBT and GET. I understand it, but the scientific
process requires more objectivity and we will all be better off if we
accept that there's more to CFS than fatigue. "

As Latta ("Using the correct tool for the right job" ) remarked :
"Unfortunately CFS has come to be an umbrella term used to describe
anything from people who are merely tired and weary all the way to
severely sick patients with an organic brain disease (CFS WHO ICD-10
G93.3 Vol.3 pg 528).

Kinlon ( "Do CBT and GET really work for Chronic Fatigue Syndrome?"
)pointed out that : "Santhouse and colleagues (1) claim that
treatments such as cognitive behavioural therapy (CBT) and graded
exercise therapy (GET) "have been shown to work" in Chronic Fatigue
Syndrome (CFS)/Myalgic Encephalomyelitis (ME).i However, what the
literature actually shows is that such therapies have an effect, which
is not necessarily the same thing as "working": a meta-analysis
calculated the average Cohen's d effect size across various CBT and
GET studies to be 0.48, which would generally be described as a small
effect size(2)

It is disingenuous to claim that the use of CBT and GET "in a group of
patients who cannot normally travel to hospital to access them, is
going to produce a 'dramatic recovery'. " wrote Shepherd, ("Severely
affected - severely neglected ") "A considerable amount of
accumulating patient evidence(3) indicates that a significant
proportion of people with ME/CFS find that the two behavioural
treatments being recommended - cognitive behaviour therapy (CBT) and
graded exercise therapy (GET) - are either ineffective (ie CBT) or
harmful (ie GET). And the only research so far to investigate
potential risk factors which are involved in the development of severe
ME/CFS 4) has concluded that there is no evidence to implicate
personality or neurotic traits.

Twisk ("CBT/GET is ineffective and potentially harmful. ME/CFS
patients seem to die considerably younger". )stressed(5) (6) (7) how
"CBT/GET has a negative effect on the symptomology of many ME/CFS
patients (pain, muscle weakness, neurocognitive impairment etc.)

This can be explained by the fact that exertion, and thus GET,
intensifies the pre-existing pathophysiology: inflammation, immune
dysfunction, immunosuppression, (persistent) infections, oxidative and
nitrosative stress and their sequels, e.g. mitochondrial
damage/dysfunction and a disturbed circulation
(8) (9) " Twisk also
corrects Santhouse's incorrect assertion that 'the greatest risk to
life is likely to be suicide' and 'this is often linked to depression
that can be effectively treated'.

A study into the causes of death by a Jason (10) established that ±20%
of the patients had died from cancer, ±20% had died as the consequence
of heart failure, and ±20% as a result of suicide.

The mean age of those who died from cancer and suicide was 47.8 and
39.3 years, respectively, which is ±24 years younger than those who
died from cancer and suicide in the general population.

Pheby ( "No room for complacency" )questioned Santhouse's citation of
a recent systematic review (11) " as evidence of the effectiveness of
behavioural interventions such as cognitive behaviour therapy and
graded exercise in CFS/ME, yet that same review states: "The protocols
for many clinical studies require patients to attend a clinic for
treatment and/or assessment. These conditions may exclude people
severely affected with CFS/ME from taking part and hence bias the
sample towards those with less severe symptoms." Indeed, the only
evidence cited by Santhouse et al that such interventions may benefit
the severely affected is an uncontrolled pilot study of only nineteen
patients, published more than a decade ago (12).

Glen ("Determined individual with CFS/ME" ), an ME patient outlined
how " The only help offered to me on the NHS has been CBT and a
Vitamin D test. The conclusion of an assessment for CBT was that as "a
highly resilient and determined individual" I would not be offered a
course of CBT.

It is evident to me that there is currently nothing beyond the obvious
(pacing, diet, keeping motivated etc.) that I, or anyone else, can do
to help me recover. "

Barclay ("What can they offer to counter defeatism ")poignantly
recounted how : "My own experience is that when I am bedbound or
housebound by the physical symptoms of the disease, NHS care ceases.

While I lie trapped in my own home, my teeth are rotting in my head, I
suffer fungal problems as I am unable to bath, sinus infections with
green mucous eat through my septum and choke me. Food poisoning four
years ago has left me often incontinent and I live with constant sore
throats and painful raised glands with lumps, in a perpetual
continuation of the virus that heralded the start of the disease.

I need specialist help to tackle these physical problems beyond what
my GP can offer.

The lack of practical medical help, the passing decades, the
frustration of being unable to keep clean, to cook and eat and the
isolation imposed by being unable to walk, speak, listen, type and
read at will would cause an emotional reaction in the most stoic
individual and for that result from a lack of care to be then
classified as simply depression seems shallow.

The last thing I welcome in this position is more information on CBT,
graded exercise or pacing, having already had mixed (on balance
negative) experiences with them. "

Bartholomew ("Welcomed common sense and clarity" )described how "I am
struggling to cope with my condition which has been getting steadily
worse since my second URT infection nearly two years ago. From a
dynamic, active person, optimistic about my future, I have become a
shuffling recluse unable to keep myself, my clothes or my house clean.
I live alone and cannot afford paid help as I lost my NHS job because
of my ME.

Break a leg and you are treated with traction and a plaster cast. You
will provoke commiseration and you can look forward to the leg
healing.

A diagnosis of asthma will engender concern and will be met with
sympathy and an inhaler.

Have the misfortune to develop ME and you find yourself without
treatment, without answers, without understanding, without empathy,
without a cure. For the record, ME is not a lifestyle choice or a
psychiatric condition (check it out with the WHO)! "

Belgian ME patient Hugaerts ( "The Belgian experiment with CBT and
GET" ) was scathing about the supposed effectiveness of CBT and GET :
"In Belgium, during 5 years, the Belgian Government subsidized 5 "CFS
Reference Centers" who treated patients solely with CBT/GET. They used
the Fukuda criteria for selection. Every year, 1.5 million Euro was
distributed to the 5 centers. This makes a total of 7.5 million Euro
during 5 years. 800 patients were treated during this period.

The Belgian Health Care Knowledge Centre (KCE) reviewed the result
after 5 years (2009) The KCE is a semi-governmental institution which
produces analyses and studies in different research of health topics.

Conclusion :
patients feeling better : 6 %
Patients feeling worse : 38 %
Patients with no result, not better nor worse : the remaining 56 %

The ultimate goal of the Reference Centers and their CBT/GET therapy was not met: NOT ONE PATIENT RESUMED WORK.

This confirms that CBT/GET is ineffectively and possibly harmful."



Munn (" It is more than defeatism which greets patients with ME"
)asked : "Why as Doctors do we find this condition so hard to
understand? We all accept the effect the psyche has on the physical so
why can't we accept a condition which transcends both? I have been met
by colleagues who have told me I 'do not want to be labelled as an ME
sufferer and should not admit to it'. I have had it discounted from my
past medical history as if it didn't exist. I have sat in a room where
colleagues have made the most appalling assumptions and
generalisations about ME sufferers and discounted ME sufferers'
concerns about the side effects of a drug as if their views did not
matter. "


Grant(Chronic Fatigue Syndrome, mitochondrial dysfunction and toxic
metals ") pointed out how : "Most biochemists may still believe that
there is no known cause, no diagnostic test, and no satisfactory
treatment for Chronic Fatigue Syndrome(CFS) or Myalgic Encephalitis
(ME). This is no longer true as a seminal 2009 publication from
Myhill, Booth and McLaren-Howard found the severity of the illness
correlates highly significantly with the degree of mitochondrial
dysfunction
(p<0.001).(13

Thorpe ("triumphalism not defeatism" ) sees "no defeatism in the words
and actions of those medics who acknowledge recent biomedical
evidence. They are buzzing with excitement and triumphalism.( See
references below 14)They show the need to investigate the pathology of
the illness more thoroughly and they show the need to split out the
separate illnesses that are emerging from the dustbin diagnosis of
CFS. There is hope for a diagnostic test

Spence (" Not the Answer to the Biomedical Enigma" explained how " The
BMJ Editorial by three eminent London psychiatrists claims "an air of
defeatism" about ME/CFS is obscuring the fact that there are
treatments which "have been shown to work" and which are recommended
by the National Institute for Clinical Excellence (NICE) in Clinical
Guideline 53. The reality is less clear-cut, however. The treatments
referred to are cognitive behavioural therapy (CBT; a form of
psychotherapy designed to manage dysfunctional illness beliefs) and
graded exercise therapy (used as part of a biopsychosocial programme
predicated on a model of physical deconditioning). Both
cognitive–behavioural approaches have a general, non-specific
applicability and are used increasingly as symptom management and
coping strategies in a range of conditions.

In the context of ME/CFS, cognitive–behavioural approaches are not
evidence-based to a level where they can be claimed to be specific
"treatments" – an unsurprising observation given that this "syndrome"
diagnosis delivers a heterogeneous population widely believed to
contain distinct clinical sub-groups (15). The systematic review
underpinning NICE Guideline 53 found 10 randomized clinical trials on
adults, 3 of these negative with the remainder showing mild to modest
positive, though non- curative, results. Recent overviews have
confirmed this; a recent Cochrane review (16) found 15 studies of CBT
(including controlled clinical trials) for ME/CFS and took a more
cautious view of the evidence and its limitations than the authors of
the BMJ Editorial, as did a second recent review (17). This latter
meta-analysis of 13 clinical trials (representing 1371 patients) found
a very mixed bag of studies and reported an overall effect size that
was small–moderate by usual standards. Not for nothing did NICE
Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it
did "not regard CBT or other behavioural therapies as curative or
directed at the underlying disease process".

Regarding CBT and GET , Heath ( "CBT and GET taking up valuable fund"s
) vividly described how "I undertook the course of CBT offered by
King's College Hospital with an open mind and a degree of optimism. I
finished the course feeling depressed and like a failure
. I now view
CBT as akin to other quack 'therapies' such as the Lightening Process.
Your recovery is in your hands. If you don't improve, you're a
failure. My therapist seemed genuinely confused when I did not make
any improvement, and in fact suffered my worst relapse to date whilst
endeavouring, against my better instincts, to adhere to their GET and
sleep programme. I completed the course doing less physical activity
than when I had started, and feeling guilty for my own 'unhelpful
illness beliefs'.


Cox ( "What is chronic fatigue and what is M.E.?" )movingly stated how
" Throughout the period of Lynn Gilderdale's illness, a number of
researchers have seemed solely intent on promoting and perpetuating a
particular psychosocial illness model - often making extravagant
claims for interventions such as CBT and GET, which upon close
scrutiny often show that the effects have at best been modest and
sometimes harmful, with outcome measurements often unsatisfactorily
subjective. Frequently studies have excluded the severely affected.

It is also sobering to reflect that Lynn Gilderdale became ill 4 years
before the Royal Colleges Report (18); 10 yrs before the Chief Medical
Officer's Report (19); 11 years before the (to date unproductive)
Medical Research Council's Research Strategy for CFS/ME (20) and as we
all too aware, died tragically 2 years after the publication of the
NICE Guidelines (21 - which had little to say, or offer, the most
severely affected of patients."

Crowhurst L ("A dangerous path to take" ) pointed to how : "What is
missing from this article is any acknowledgement that it is the
psychiatric lobby's influence in ME that has led to the confusion over
what ME is and the lack of physical treatment and the lack of proper
biomedical investigations. The psychiatric approach is to deny the
physical reality of an ME patient's illness and to promote the
unproven view that a person is ill because of maladaptive thinking and
de- conditioning. "

Australian physician Andrew ("I adore CBT ") in a widely welcomed
response , described how "The basis of CBT for ME/CFS is fantastic.
First, you blame the patient for his illness, and then when CBT
doesn't cure him, you blame him for not being motivated. When I'm fit
and well again, I will use this same principle when I see a patient
with for example, a severe infection. If the antibiotic I have
prescribed, doesn't solve the problem, then I will blame the patient.
That the culture has shown that I prescribed the wrong treatment, is
something I will ignore. "


Robinson ("It's wrong and misguided to "Imagine"" ) described the lack
of service provision for the severely affected "There are
approximately 60, 000 severely affected patients, in my experience
(since 1997), most of who receive little or no support from statutory
services. Most severely affected, housebound patients, are nursed and
cared for by their families.

In my experience, those that approach services such as Social Care, or
other "specialist services" (such as yours) which are sometimes
requested by desperate patients with secondary needs, are, more often
than not, refused even an assessment. Reasons given, Not meeting "the
criteria"for assessment is the norm, or following assessment,
beingturned down for support due to ME patients "not meeting the
criteria."- even though these patients have "critical and substantial"
needs, including secondary well being needs."


Former Staff Nurse Stableforth ( "High time to broaden the field" )is
very concerned about "The lack of a basic diagnostic test and
biomedical treatment is what is most likely to be hampering physicians
(and insurers), not defeatism as such. This can only be gained by
serious investigation into underlying aetiology - not by application
of general 'management tools'. Patients across the entire spectrum of
CFS/ME have many disabling physical abnormalities other than simple
'fatigue' (which in itself fails to describe the experience). If we
continue to focus simply on 'fatigue' and to limit physicians to basic
tests, then as some biomedical researchers have pointed out, ME/CFS
can only effectively become a 'dustbin diagnosis'.


Having worked previously as an NHS Staff Nurse (Coronary Care) and
coming from a medical family I truly believed that UK medicine in the
NHS was cutting edge. However once diagnosed with CFS/PVF/ME, I was
shocked to find that a highly trained group of professionals whose
intelligence I had always respected had no answers, but most
damagingly, weren't prepared to look much further for them (and was in
one case breathtakingly dismissive). The 'pioneering spirit of the
scientists of old' appears to have become bogged down in 'legal
guidelines' and even individual well intentioned doctors are
contrained by budgets, accepted treatments for accepted ICD codes,
insurance purposes and so forth. CFS patients find that in spite of
their insistence that something more serious and physical is afoot, in
practical reality there is so little help to get to the bottom of it.
And once this happens, the patient effectively becomes sidelined from
the whole medical process. "



Morris, a psychologist suggests (C"BT The Mythology" ) that
Santhouse's article " trivialises the severity of the illness and
contains a number of factual inaccuracies.

NICE is selectively quoted.Nice actually point out that CFS/ME is a
very serious real illness of yet unknown origin and can be more
disabling as multiple sclerosis or late stage aids---There is no known
cure or effective treatment.

This should have been quoted.

NICE specifically make the point that CBT is not a treatment for the
symptoms but an aid to help patients come to terms with their illness.
Is this what is meant by" working"?

CBT has never shown any objective benefit "



Jones ("Shedding a little more light on 'Defeatism" ) drew attention
to the fact that : "With regard to the specific case of Lynn
Gilderdale, it should be born in mind that here a vaccination as well
as infections were linked to the onset of her illness which resulted
in progressive serious health problems. Her condition was so severe
that she was hospitalised 50 times during her 17 years' suffering, as
the Panorama programme revealed. - The proximity of immunisations with
onset of ME or an exacerbation of the condition have been documented
(22,23). An earlier longitudinal study from the general medical
literature recorded the fact that most hospital patients with
post-vaccinal neuropathies had a concomitant illness (24).

To discount factors like infections, immunisations, antibiotics, oral
contraceptives for women and drugs in general, and/or exposure to
toxic substances (e.g. OP pesticides, toxic metals etc) in the
aetiology of this disease is tantamount to ignoring key factors in a
complex equation, in my opinion (see also response from Dr Ellen
Grant). Of course life-style factors like nutrition and stress also
play a role. As Dr Melvin Ramsay said in his booklet 'Myalgic
Encephalomyelitis and Postviral Fatigue States - The saga of the Royal
Free disease' (25, reflecting on his experiences as the Consultant
Physician at that Hospital during the 1955 outbreak: "I had long
harboured a suspicion that the triggering factor of ME is to be found
in the immunological state of the patient and research is showing that
this might be the case" (p26). Dr Shepherd said in his contribution to
a recent Times article (26), what is needed amongst others is research
into the role of the immune response to infections. It stands to
reason that an impaired or dysregulated immune system cannot deal
effectively with infections, and we are all exposed to countless toxic
substances in the environment and in everyday life.


Pring ("Psychiatric measures will not relieve me of a neurological
illness" ) powerfully describes how : M.E. is an incapacitating,
soul-destroying illness that strips away a sufferer's entire life.
Before I became ill, I was a newly qualified teacher, with a new
husband and home. I was beautiful, vibrant and ambitious. After a
succession of viruses I was struck down with ME/CFS and finally had to
retire at the age of 39. I relied on my doctor to do what was best for
me. However, I had no idea at the time that once labelled with the
illness I would no longer be offered further testing or treatment
other than talk therapy and other psychiatric measures.

Psychiatric measures will not relieve me of a neurological illness. "

Simpson ( "Education the Key to" )refutes the suggestion that patients
are pessimistic : Any pessimism exhibited by those with this illness
finds its source not in the condition itself but in the ignorance and
mendacity of those who engineer scarce funding from the MRC in order
to support the pretence that ME is a somatoform condition, or who
publish research based on flawed diagnostic criteria. In fact those
suffering the tremendous disability of severe ME are surprisingly
optimistic despite the travails of having to deal with prejudice
from
some parts of the medical profession and the media.

To use NICE as an example for promoting the use of CBT and GET is
risible and perverse, yet entirely predictable as biomedical research
was ignored.The fact that 90% percent of ME support groups opposed
NICE, the fact that ME patients took NICE to a judicial review in
protest at their guidelines for ME, the fact that the only support
that NICE could muster from those supposedly supporting the ME
community were from organisations that accept government money and who
themselves organise "psychosocial conferences" on ME – all of this
illustrates the lack of confidence which people with ME and their
families have for NICE. "


Jafry ("Re: triumphalism not defeatism" ) commented that Santhoue's "
article could be re-titled: Psychiatrists' insistence on CBT/GET is
undermining the progress of biomedical research.

It is no wonder some in the ME community are labelled as militants. We
are angry and exhausted and baffled at not being listened to. When
will it end? What does it take? "


As Cooper ("Defeatism and Chronic Fatigue" )stressed : "Many
'unfortunate victims' have had the opportunity to experience the
'benefits of the treatments outlined by Santhouse and his colleagues'
but many of these victims are still unwell. (If you recall, some of
them are dead). "


den Broder ("Defeatism leads to CBT/GET )from the Netherlands ,
pointed out how " ME can be treated - only not by CBT/GET. Research by
NIVEL (De Veer, 2008) shows that CBT, GET as well as antidepressants
offer, of all commonly applied treatments, by far the worst results.
Even NICE, that produced a guideline on CFS that many professionals
refuse to support (NICE, 2007), does not recommend CBT or GET for the
severely ill as the authors, in their defeat, appear to do.

Diets, supplements, bedrest, pacing and painkillers, on the other
hand, are among the treatments that are known to, sometimes
significantly, improve the ME patient's quality of life (De Veer,
2008). But that is just the beginning: they do not cure.

There is no reason why ME should not be curable. We know most of what's wrong - in fact, we knew that already before the psychiatrists muddied the scene (see e.g. Hyde, 1992) - so all it takes is good research, which of course needs funding. The millions that are
currently wasted on CBT/GET would do nicely.

So many people need not have died, or lead a crippled life."


It is a human rights issue, stated Arnoldus ("A human rights issue ),
also from the Netherlands : " There is enough reason to believe that
the adoption of broad criteria for ME/CFS does stigmatize patients and
"will have crucial influences on CFS epidemiologic findings, on rates
of psychiatric co-morbidity, and ultimately on the likelihood of
finding a biological marker and identified etiology"

There is evidence that in certain situations psychotherapy can do harm
to ME/CFS patients. We have to consider that the debate is not only
about rigorous science. At stake is the struggle for honoring
elementary human rights to ME/CFS patients (27, 28).



"This editorial" said Crowhurst G(Defeated ? Not this carer. )

   ,"shows how it is the psychiatrists, whose "unproven beliefs and
assumptions are presented as fact" (Hooper 29) who face defeat ; how
they have nothing to offer the severely affected , except an
increasingly discredited , vapid, ideology, that has so destroyed
lives. "

Conclusion :

Although the psychiatric view may appear to be dominant , all powerful
and  unsinkable , it is upon  the  unsinkable truth of severe ME that
they will inevitably be sunk.

Up against the devastating physical reality of severe ME,  the
psychiatric argument stands no chance and will gain no support. These
responses have shown how utterly lacking in foundation the psychiatric
psychosocial paradigm really is.  The future lies  in biomedical
research, testing and treatment

The number of passionate, brave  Rapid Responses highlights optimism,
wisdom, experience, research , validation and hope for a better
future; all of which  bears great witness to the true nature of this
neurological disease.

The tide is surely turning.





1.Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ
2010;340:c738


2.Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar N, Schutte NS.
Efficacy of cognitive behavioral therapy for chronic fatigue syndrome:
a meta-analysis. Clin Psychol Rev. 2008 Jun;28(5):736-45.


3.Report of the CFS/ME Working Group. Department of Health; January
2002.
http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4059506.pdf


4.Pheby D and Saffron L. Risk factors for severe ME/CFS. Biology and
Medicine 2009; 1: 50 -74.http://biolmedonline.com/Articles/vol1_4_50-
74.pdf


5.Council of approval with regards to rehabilitation contracts with
CFS reference [Akkoordraad in het kader van de
revalidatieovereenkomsten inzake ten laste neming door
Referentiecentra van patiënten lijdend aan het Chronisch
vermoeidheidssyndroom] [Dutch]. Evaluation Report (2002- 2004) with
respect to Rehabilitation Contracts between the RIZIV and the CFS
Reference Centers [Evaluation Report 2002-2004 with respect to
rehabilitation contracts between the RIZIV and the CFS Reference
Centers] [Dutch). 2006, July.


6.Action for M.E./AfME. Scotland M.E./CFS Scoping Exercise Report. 2007.


7.Bjørkum T, Wang CE, Waterloo K. [Patients' experience with treatment
of chronic fatigue syndrome] [Article in Norwegian]. Tidsskr Nor
Laegeforen. 2009 Jun 11;129(12):1214-6.


8.Kerr JR, Petty R, Burke B, Gough J, Fear D, Sinclair LI, Mattey DL,
Richards SC, Montgomery J, Baldwin DA, et al. Gene expression subtypes
in patients with chronic fatigue syndrome/myalgic encephalomyelitis. J
Infect Dis. 2008 Apr 15;197(8):1171-1184.


9.Gow JW, Hagan S, Herzyk P, Cannon C, Behan PO, Chaudhuri A. A gene
signature for post-infectious chronic fatigue syndrome. BMC Medical
Genomics 2009, 2:38. doi:10.1186/1755-8794-2-38.


10.Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S (2006).
Causes of death among patients with chronic fatigue syndrome. Health
care for women international. 2006; 27 (7): 615–26.
doi:10.1080/07399330600803766.


11.Chambers D, Bagnall AM, Hempel S, Forbes C. Interventions for the
treatment, management and rehabilitation of patients with chronic
fatigue syndrome/myalgic encephalomyelitis: an updated systematic
review. J R Soc Med 2006;99:506-20.


12.Essame CS, Phelan S, Aggett P, White PD. Pilot study of a
multidisciplinary inpatient rehabilitation of severely incapacitated
patients with the chronic fatigue syndrome. J Chronic Fatigue Syndr
1998;4:51-60.


13. Myhill M, Booth NE, McLaren-Howard J. Chronic fatigue syndrome and
mitochondrial dysfunction. Int J Clin Exp Med 2009;2:1-16.



14. Morch K, Hanevik K, Rortveit G, Wensaas KA, Eide GE, Hausken T,
Langeland N. Severity of Giardia infection associated with
post-infectious fatigue and abdominal symptoms two years after. BMC
Infect Dis. ;9(1):206. [Epub ahead of print]


15. Jason LA et al. Chronic Fatigue Syndrome: The Need for Subtypes.
Neuropsychology Review 2005; 15(1): 29-58


16. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy
for chronic fatigue syndrome in adults. Cochrane Database Syst Rev.
2008 Jul 16; (3): CD001027.


17. Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar N, Schutte NS.
Clin Psychol Rev 2008; 28(5): 736-45.


18. Chronic fatigue syndrome. Report of the joint working group of the
royal colleges of physicians, psychiatrists and general practitioners.
London: RCP, 1996. (CR 54.)


19. CFS/ME Working Group. Report to the Chief Medical Officer of an
independ­ent working group. London: Department of Health, 2002.


20. CFS/ME Research Strategy. MRC CFS/ME Research Advisory Group (RAG)
report 2003.


21. National Institute for Health and Clinical Excellence. NICE
clinical guideline 53: Chronic fatigue syndrome/myalgic
encephalomyelitis (or encephalopathy). 2007.


22.Hyde BM et al (Editors). The Clinical and Scientific Basis of
ME/CFS. The Nightingale Research Foundation, Ottawa, Canada, 1992.
Chapters 4 (p29); 12 (p115), 43 (p392), 73 generally.


23, Leeming J. Risks and Benefits. Nursing Standard, 17.5.1995,
Vol.9;34:22-23.


24. Pollock TM et al. Seven Year Survey of disorders attributed to
vaccination in North West Thames Region. Lancet 1983;i:753-57.


25.Ramsay AM. Myalgic Encephalomyelitis and Postviral Fatigue States -
The saga of Royal Free disease. Gower Medical Publishing, London, 1988
(p26).


26.Doctors, school, friends thought I was faking it'. Times 2
(Health), 25.1.2010, p6+7.


27. Mitchell R, and Mitchell V (2006). CBT, GET And Human Rights, From
the IiME Response to the NICE Draft Guidelines, Invest in ME.


28. Morris D (2001) The lived experiences of ME/CFS: a study into
human rights and equity in tertiary education, ME/CFS society,
Adelaide, Australia.


29. Hooper M (2010) Magical Medicine: How to make a disease disappear,
PRESS RELEASE: MEDICAL RESEARCH COUNCIL,
http://www.meactionuk.org.uk/magical-medicine.htm


iSanthouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ
2010;340:c738



More responses to BMJ

Thanks to Tom for keeping track of these!
 
http://www.bmj.com/cgi/eletters/340/feb11_1/c738  

A human rights issue
Rob J. Arnoldus   (22 February 2010)

Defeated ? Not this carer.
Greg P Crowhurst   (23 February 2010)

Defeatism
Ernest Roberts   (23 February 2010)

Yes, it is time for a rethink
John Gartside   (24 February 2010)

=========

A human rights issue
22 February 2010
    
Rob J. Arnoldus,
teacher/researcher
3001 HA Rotterdam, The Netherlands


Santhouse et al. are proponents of the use of Cognitive Behaviour (CBT) and
Graded Exercise therapy (GET) to cure a neurological illness.
Santhouse et
al. ignore the documented pathophysiology of ME/CFS, and disregard the
reality of severe ME/CFS in patients like Lynn Gilderdale.

There is enough reason to believe that the adoption of broad criteria for
ME/CFS does stigmatize patients and "will have crucial influences on CFS
epidemiologic findings, on rates of psychiatric co-morbidity, and ultimately
on the likelihood of finding a biological marker and identified etiology"
(1).

There is evidence that in certain situations psychotherapy can do harm to
ME/CFS patients. We have to consider that the debate is not only about
rigorous science. At stake is the struggle for honoring elementary human
rights to ME/CFS patients
(2,3).

1. Jason LA, Richman JA (2007). How Sciences can stigmatize: The case of
chronic fatigue syndrome, Journal of Chronic Fatigue Syndrome, 14, 85- 103.

2. Mitchell R, and Mitchell V (2006). CBT, GET And Human Rights, From the
IiME Response to the NICE Draft Guidelines, Invest in ME.

3. Morris D (2001) The lived experiences of ME/CFS: a study into human
rights and equity in tertiary education, ME/CFS society, Adelaide,
Australia.

Competing interests: None declared

==================

Defeated ? Not this carer.
23 February 2010
    
Greg P Crowhurst,
Full time carer
n/a



I have spent the last sixteen years caring full time for my wife who has
very severe ME. The greatest challenge those of us who seek treatment for
their loved ones face, is the ongoing struggle to get ME removed from its
association with generalized fatigue states.

Far from feeling "defeated", however, there is a real sense that at last the
tide is beginning to turn our way ; that the world is finally waking up to
the true horror that is ME.

Those of us who have fought so long for biomedical recognition are buoyantly
optimistic. This editorial shows how it is the psychiatrists, whose
"unproven beliefs and assumptions are presented as fact"
(Hooper 2010) who
face defeat ; how they have nothing to offer the severely affected , except
an increasingly discredited , vapid, ideology, that has so destroyed lives.

Have Santhouse et al any idea what a struggle everyday life is like for the
severe ME sufferer ? My wife describes how : "Having severe ME is
unimaginable ; the experience is so different , intense and unremitting than
anything I have ever experienced before. I am never unaware of the range of
symptoms that rage through my body , and are dominated by intense never
ending pain in every millimetre of my skin and muscles, over and throughout
my whole body; head shoulders, back, front , arms legs, hands , feet, toes ,
fingers, eye lids , scalp the soles of my feet, the tip of my nose , my
eyebrows even. They all burn, throb, tingle, itch, and hurt in ways
indescribably unbearable , along with other unusual sensations"

As Dowsett (2006) points out , : "ME/CFS affects more Americans than AIDS,
lung cancer and breast cancer combined, more people than have multiple
sclerosis or cystic fibrosis, and costs the U.S. more than $9.1 billion
annually in lost productivity. More importantly, nearly 90% of patients have
not been properly diagnosed. Recovery rate is poor, estimated between 5% and
10% of patients attaining total remission. Patients can be as functionally
impaired as those suffering from diabetes, heart failure and kidney disease,
and are often as severely disabled as those with heart failure, late-stage
AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive
pulmonary disease). "

Given the level of concern raised not just by patients but professionals,
listed by Williams (2009) , about NICE's irrelevance to neurological ME ,
Santhouse et al's recommendation of CBT and GET for the severely affected is
breathtaking:

Association of British Neurologists: "it almost seems that a select group of
psychiatrists with a polarised view of this complex condition is directing
the development of the guideline from 'behind the scene' "

Association for Psychoanalytic Psychotherapy in the NHS :"It is highly
misleading to state that CBT is the therapy of first choice, since the only
relative efficacy RCT quoted in the Guideline shows that counselling has
better outcomes than CBT."

British Association for Counselling and Psychotherapy (BACP): "responses to
the Action for ME Membership Survey rate CBT and GET as the least helpful of
a range of interventions..."

British Dietetic Association: "It is unhelpful to simply state that
'Exclusion diets are not generally recommended for the management of CFS/ME'
when irritable bowel symptomatology is quite common in this illness."

Chartered Society of Physiotherapy: "If 50% get worse with GET, why suggest
it as first line of treatment?"
College of Occupational Therapists: "The
College has serious reservations about the suitability of this Guideline."

ME Research UK: (Commenting on "…CBT is an evidence-based treatment for
CFS/ME…). It is not. The evidence base consists of only five trials which
have a validity score of less than 10."

National CFS/ME Observatory: "The belief that evidence-based guidelines can
be constructed on such an inadequate evidence base is, in our opinion,
misguided."

National Coordinating Centre for Health Technology Assessment: "NICE largely
pays lip service to the principle of consensus, with patient evidence being
viewed as biased and virtually ignored".

NHS Plus: "the advice given to maintain exercise even when there is an
increase in symptoms is potentially harmful and dangerous, and the supposed
negative effects of deconditioning would be negligible in comparison"


Royal College of Paediatrics and Child Health: "There is a danger in relying
solely on information from systematic reviews of clinical and randomised
trial reports for non-pharmaceutical treatments that are not easily defined
or replicated, such as CBT and GET."

Royal College of Physicians of London: "We think that this is a potentially
dangerous statement (ie.) that with increases in CFS/ME symptoms, exercise
or physical activity should be maintained to avoid the negative effects of
deconditioning. We are not aware of any clinician who would make this
recommendation, except in a very mildly affected patient."

Sheffield South West Primary Care Trust: "The narrow focus of the NICE
Guideline may lead to helpful approaches being undermined and patient
preference / clinical judgment being undervalued. All clinicians do not
subscribe to the 'CBT model of CFS/ME', and (it) does not seem to be well
received by many ME Support Groups either".

(Source Williams 2009)

Significantly, NICE (NICE "2007)does not recommend CBT and GET for people
with Severe ME, who are excluded from Criterion 7 of its August 2007 Audit
Criteria ; those ME patients "provided with cognitive behavioural therapy
and/or graded exercise therapy as a treatment approach."

My wife has not known one single moment free of throbbing, screaming pain, a
host of neurological symptoms and intense, unfathomable suffering, in the
last 16 years.

Santhouse el al's article will only contribute to the abuse, neglect and
disbelief that ME sufferers and Carers have to deal with.

One day though, the depth of the ME medical scandal will be revealed,
especially with 5000 published medical papers and recent cutting -edge
research into the XMRV retro-virus, dispelling once and for all the myth
that ME is a psychiatric condition.

Defeated ? Not this carer .

References :

Dowsett B (2006) ME/CFS Epidemiology & Epidemics www.name-us.org/ResearchPages/ResEpidemic.htm  

Hooper M (2010) Magical Medicine: How to make a disease disappear, PRESS
RELEASE: MEDICAL RESEARCH COUNCIL,
http://www.meactionuk.org.uk/magical-medicine.htm  

NICE (2007) Audit criteria Chronic fatigue syndrome/myalgic
encephalomyelitis (or encephalopathy)

http://www.nice.org.uk/nicemedia/pdf/CG53AuditCriteria.doc  

Williams M (2008) A NICE Dilemma
http://www.meactionuk.org.uk/A_NICE_DILEMMA  

Margaret Williams 2009 : Examples of concerns raised by professional bodies
about the NICE (draft) Guideline CG53 on "CFS/ME"
http://meagenda.wordpress.com/2009/03/13/examples-of-concerns-raised-by-professional-bodies-about-the-nice-draft-guideline-cg53-on-%E2%80%9Ccfsme%E2%80%9D/  

Competing interests: None declared

==================

Defeatism
23 February 2010
    
Ernest Roberts,
PWME
NW 10



Sir,

Being removed from circulation by what may eventually turn out to be a
chronic infectious disease (1) is an interesting experience. One of the more
striking aspects of that experience is discovering the strength and fixity
of irrational lay beliefs about exercise and positive thinking as antidotes.
The existence of an estimated 17 million people worldwide (1) with ME,
testifies to the problems of irrational folk remedies, authority,
superstition, and to epistemic misunderstandings about what constitutes
reliable evidence. Logical thought and good hypotheses do not seem to occur
naturally in the human brain, and when affected personally by a disease
outwith the experience of most others, one can begin as a non- scientist to
appreciate in often dramatically concrete terms, why the methods and
disciplines of science developed.

Announcing that an atmosphere ('air') can subvert evidence, Alistair
Santhouse, Matthew Hotopf and Anthony David suggested that, although it
would be inappropriate, they would like to have been able to comment on a
matter best decided by judge and jury, had the coroners inquest and post-
mortem data along with other personal details been available to them. They
reflected on finding the media portrayal of a condition the most striking
aspect of the death of a young woman, and revealed how much they regretted
the loss of a media opportunity to introduce some of the consequences of
ignorance ('controversies') into a debate which had focused on the rights
and wrongs of assisted suicide, which they believe will present a similar
challenge for professionals in the future.

They recommended sometimes considering another diagnosis for the original
diagnosis, and if that doesn't work out, the next step is to ask about the
rate of premature death, which is not increased in the first diagnosis, but
is increased in another diagnosis, which might cause the first diagnosis,
and they asserted that nobody would dispute that the second diagnosis can be
treated, exactly the same as it can be treated in cancer and motor neuron
disease, where presumably in this context, doctors also don't know what
they're dealing with and don't get involved. People don't trust these
doctors, the profession doesn't like debate, and there's even a view to
persuade doctors it's (ME) a real illness. Doctors have treatments that
often don't work properly, but do work, and can trigger dramatic recovery.
The internet is dangerous, it doesn't save lives, and doctors in emotionally
charged situations must go with these treatments in case they work, because
it is their duty.

Santhouse, Hotopf and David suggest that the alternative to these treatments
is no treatment, that this is disastrous, and people may feel that the
medical profession has given up on other people as a "hopeless case".
These
are valuable insights, and I thank the authors for their time and trouble. I
found the military metaphor most helpful.

(1) http://www.sciencemag.org/cgi/content/abstract/1179052  

Science 23 October 2009: Vol. 326. no. 5952, pp. 585 - 589

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

Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A. Pfost,
Kathryn S. Hagen, Daniel L. Peterson, Sandra K. Ruscetti, Rachel K. Bagni,
Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman, Judy A.
Mikovits

Competing interests: None declared

=============

Yes, it is time for a rethink
24 February 2010
    
John Gartside,
Patient now retired (ex IT worker)
n/a



Mssrs Santhouse et al have raised important issues (to them) of the
Gilderdale case - not for them the simple tragedy of a wasted life, a broken
family; no, more importantly, is the incorrect and frankly sensational
portrayal of CFS/ME by irresponsible journals such the Daily Mail leading
the gormless public to hold incorrect beliefs in contradiction to those held
by knowledgeable clinicians.

First of all there is the issue of the diagnosis of Lynn Gilderdale and
those others with very serious symptoms - even a psychiatrist confronted
with Lynn during her lifetime might have queried whether it was all in her
mind that she had lain in bed, apparently in pain, when other alternative
lifestyles might have beckoned.

Second, there is the issue of the unsatisfactory nomenclature for this
condition. Chronic Fatigue Syndrome - too vague; myalgic encephalomyelitis -
are you joking; where does that come from?

Third, there is the tendency of those suffering from CFS/ME to commit
suicide whiich, of course, is a characteristic of those suffering from
severe depression. In other words, some of those with CFS/ME are suffering
from depression which nobody argues is a psychiatric condition. In other
words, the idea that people might commit suicide simply because rationally
they see no future for themselves is clearly erroneous.

In summary, cases of CFS/ME are not severely ill, because CFS/ME is a mild
illness treatable by simple interventions. Some who believe themselves to be
ill have made themselves depressed which can easily be treated with drugs.
Those who are severely ill have been misdiagnosed as suffering from CFS/ME.

What we have therefore is a psychiatric disorder in which the patient has
developed a false belief about their mental and physical state which can be
cured by actively encouraging them to get off their backsides (GET) and pull
themselves together (CBT). I suggest Heretical Dysmorphopsychic syndrome
(HDS) to be used henceforth for this condition.

Possibly there will be cases as a result of the Daily Mail article and
others, of anxious parents confronting there teenage child on the stairs,
all made up and ready to go, bungling them back up the stairs and into bed
with the curtains drawn, telling them they are ill and will need to rest
indefinitely and forgo the rest of their childhoods and beyond; these
parents may be suffering from HDS by proxy (or Dacreitis).

For myself, I have had CFS/ME since my mid twenties. I had had glandular
fever and was off sick awaiting the day when I would wake up one morning and
feel OK again. That day never came; I saw my doctor who accepted that I had
a medical problem but that he had no idea what it was so could not refer me
to a specific consultant. I returned to work not because I was better but
because I detected no improvement in my condition and did not wish to become
a permanent invalid. For many years I assumed my condition was unknown to
medical science and quite possibly unique. Then I started reading about
'yuppie flu' and saw similarities. But as there was no cure and I was
anxious not to compromise my working status I took no action. Eventually I
was referred to a immunologist who diagnosed my condition on the basis of my
history. But to what end? None, until there is some proper palliative or
cure, which can only occur from scientific investigation. I suffered an
illness which the juvenile immune system evolved to see off without
noticeable symptom but which the maturing (thymus atrophied) immune system
will not handle without significant symptoms and in a minority of cases, a
continuous pathological state, in my case characterised by memory and
concentration difficulties and persistent and easily aggravated mental and
physical fatigue affecting both my working life and more importantly and
profoundly, my social life.

At the moment the only hope for suffers is that other more enlightened
researchers in more enlightened countries will come up with the goods
because it is not going to happen under the auspices of the NICE guidelines.


Of the very many regimes, apart from just keep going, I have tried in order
to rid myself of my affliction, the only one which has helped is
Transcendental Meditation (TM); that does provide some respite but no cure.

Competing interests: None declared  





Thursday, February 25, 2010

Toxic Insurance Company Stress Syndrome

 
 
"I might actually die from toxic insurance company stress syndrome (TICS) before the myeloma killed me!"
 
* * *
 
Why do people who are deathly ill or dying have to waste their days making multiple phone calls to their insurance company?
 
Doctors tell you to reduce your stress level ... then you go home and have to argue with your insurer over paying the bill for the doctor appointment.
 
I had a choice -- I could stress myself out, spend my few good minutes a day on the phone fighting the bureaucracy and not eat, or I could spend my time preparing healthy food so I wouldn't get sicker and pay the doctor bills myself.  Which is NOT why I was paying a huge chunk of my income for insurance.



Wednesday, February 24, 2010

CFS child returned to parents

 
Cheney testified, "This is not the stuff of medical neglect." As for treatment, he continued, "The most important thing to do is not do the bad things," such as forcing the boy to exercise, which could trigger a relapse.

The Buncombe County Department of Social Services is legally prohibited to discuss individual cases with either the public or the media. As a result, many key questions in the Baldwin case remain unanswered. They include:

Dr. Teresita Nelson, a child neurologist in Charlotte who'd also evaluated Ryan, was asked if she disagreed with the Baldwins' strategies in dealing with his illness. "I don't pass judgment, especially on a first visit, for what a family does to try and keep their children healthy," she said. "The way I look at it is, I may have the medical degree, but they have 16 years of experience with Ryan."

New Studies on Chronic Pain Drug Prescriptions - TIME

In a review published in the Jan. 20 issue of the Cochrane Database of Systematic Reviews, a leading evidence-based-medicine journal, researchers found that only one-third of 1% of chronic-pain patients without a history of substance problems became addicted to opioids during treatment. The review included 4,893 mostly middle-aged chronic-pain patients, who were treated with opioids for between six months and four years. "This suggests that people who do not have a history of drug abuse or addiction are not highly like to develop [addiction] under physician care," says Meredith Noble, lead author of the review and senior research analyst at the ECRI Institute, a health care research and consulting group near Philadelphia.

In some cases, however, undertreated pain may contribute to a situation that looks like addiction; patients ask for higher and higher doses and appear to be drug-seeking, when in fact they are looking for effective pain relief.
 
Citing the many risks of long-term NSAID use, including fatal ulcers and gastrointestinal bleeding, increased risk of heart attack and stroke and dangerous interactions with other drugs commonly prescribed to the elderly, the American Geriatrics Society suggested that seniors try acetaminophen instead. If that doesn't ease pain, older patients are advised to use opioids like codeine or morphine, which don't have the same risks.
"We're not saying opioids are innocuous. They are dangerous drugs," says Dr. Bruce Ferrell, who chaired the panel that authored the guidelines. "We are saying that there is a substantial proportion of the population for which opioids might be a better choice than NSAIDs."
While in some cases, doctors are using these powerful drugs too often, in others, concerns about misuse may have caused pain patients to suffer unnecessarily. "There is both overprescribing and underprescribing," says Volkow, who notes that, for instance, many dentists give opioids like Percoset too freely to teenagers after surgical procedures; in contrast, "you have individuals with very severe pain who are not given opioids or who are given doses that are [too low to treat the pain], and that in and of itself can put them at risk."

Read more: http://www.time.com/time/health/article/0,8599,1964782-3,00.html#ixzz0gUI5EURL
* * *
NSAIDs give me ulcers, yet even after starting to develop one, I was still refused prescription pain relief.
 
Dr. Teicheira says "if severe pain is allowed to persist for more than 24 hours, neuroplastic changes associated with the development of intractable chronic pain syndromes are evident -- damaged mechano-receptor nerve grows over the nociceptor nerve after 24-48 hours; the nociceptor atrophies."  In other words, your fibromyalgia may be iatrogenic: caused by doctors who refuse to prescribe pain medication until you have tried to "tough it out" for a few weeks.
 
My health has improved greatly since I finally -- after 7 years of requests -- got a prescription pain reliever that allowed me to sleep through the night and function during the day.
 

Monday, February 22, 2010

Letter from Dr. Hooper

Permission to Repost

http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm

Following the recent press release concerning Professor Hooper's report and
official letter of complaint about the MRC, I draw your attention to the
attached letter from Professor Hooper to Professor Sir Michael Rawlins,
Chairman of NICE, which raises serious doubts about the validity of the
psychogenic model of 'CFS/ME' and the conduct of the MRC trial that will
further underpin it.
 
Clearly there are attendant ethical and legal implications for NICE and for
all practising NHS clinicians".
 
Many thanks.

________________________________________

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry School of Sciences
Fleming Building
Wharncliffe Street
University of Sunderland
SUNDERLAND SR2 3SD
 
 
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA,
(2002)
 
19 February 2010
 
Dear Sir Michael,
 
I am a 'blast from your past'. I was at Sunderland School of Pharmacy and
you were at Newcastle in Clinical Pharmacology when the M.Pharm course in
Pharmacokinetics was developed. Congratulations on your eminent status and
knighthood.
 
Since 1997, when I retired as Professor of Medicinal Chemistry, I have been
involved with the emerging and widespread complex chronic multi-system
illnesses (Gulf War Syndrome/Illness, Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome, ME/CFS, multiple chemical sensitivity, MCS, Aerotoxic
Syndrome, organophosphate and other pesticide poisonings) that are of
growing concern and are medically challenging -- writing and lecturing,
locally, nationally and internationally.
 
This letter is linked to my concerns about ME which involves some 240,000
people in the UK with varying degrees of disability. Some 25% are housebound
or bed bound and have formed their own group, www.25megroup.org/ .
 
The 442 page report "Magical Medicine, how to make a disease disappear",
copy attached with the press release, together with a copy of my letter to
the Minister, Lord Drayson, currently the Minister responsible for the MRC,
brings together an extensive and fully referenced review of the literature
on ME.
 
It provides the evidence supporting my complaint about the MRC PACE Trial to
Lord Drayson.
 
The entire report, the press release and the letter of complaint have now
been circulated worldwide on the internet and have received much acclaim and
support from the major ME organisations in various countries and numerous
individuals, as well as academic institutions. The report is to be discussed
by the International Association of CFS/ME at its next board meeting in
early March, as confirmed by the President, Professor Fred Friedberg from
the US.
 
Despite the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE:
 
a.  ignore all this evidence
b.  show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable

c.  recommend only cognitive restructuring techniques (CBT and GET) that are
"not remotely curative" and have been shown to be of no lasting value and in
the case of GET to be positively harmful (Peter White's assertion that this
is because the interventions have been incorrectly administered has been
shown to lack credibility)

d.  proscribe any investigative tests to identify the disorder, leading to
missed diagnoses and misdiagnosis

e. support cruel, even vicious, actions that lead to patients being wrongly
sectioned and parents, particularly mothers, accused of
Munchausens'-Syndrome-by-Proxy, MSBP.

f.  the result is that essential benefits and insurance payments to support
patients and their families have not been paid or have been granted only
after protracted and expensive legal action. All this adds to the burden of
the illness for patients and for those who care for them.
 
The psychiatrists' argument that what they refer to as "CFS/ME" is
substantially different from past epidemics of ME does not withstand
scrutiny in the light of current knowledge. It is beyond question that ME is associated with a severely disrupted immune system
which renders patients
more susceptible to both further viral and chemical challenge and
reactivation of latent viruses and persistent viral-specific symptoms.
 
For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM
July 2009) and to focus on "medically unexplained fatigue" whilst ignoring
cardinal symptoms of ME is a travesty of medical science.
Of special concern and relevance are the legal and ethical requirements
facing doctors today, in particular, the legal requirement for doctors to
keep up to date with developments in medicine
and medical science (as
clearly set out in "Good Medical Practice: Duties of a doctor. The duties of
a doctor registered with the General Medical Council: 'Keep your
professional knowledge and skills up to date' and 'Never abuse your
patients' trust in you or the public's trust in the profession'
(http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp ).

Ignoring vast swathes of evidence is not keeping up to date.  For any
registered medical practitioner – consultant or GP -- to dismiss or ignore
this widely available evidence which invalidates the behavioural model of
"CFS/ME", together with the prescription of inappropriate interventions, is
in clear breach of the GMC regulations and consequently raises issues of
medical indemnity.
 
As noted in the report: "since the general body of knowledge known about by
other clinicians and researchers working in the field of ME/CFS is now so
great, the question repeatedly asked is: at what point will that body of
scientific knowledge be so great that it will be considered serious
professional misconduct to ignore it and to continue to deceive patients by
pretending that it does not exist?".
 
The recommendation not to carry out appropriate investigative tests is
inconsistent with the Hippocratic Oath in its ancient or modern form.
 
The offering of treatment that is known even by its proponents to be
ineffective is a betrayal of doctors' responsibility to their patients.
 
Merely to pronounce that the onus is on the individual doctor, when
adherence to NICE Guidelines is to become compulsory, is unacceptable.
 
Inappropriate sectioning of patients and false diagnoses such as MSBP
represents a further betrayal.
 
To rely on only a few studies, showing very modest efficacy, all of which
having been shown to have very serious flaws (as is the case with the PACE
Trial) and enshrine this inadequate information in official directions,
publications and statements from authorised bodies, including NICE, is
utterly unacceptable and dishonours the name of medicine as well as being
destructive of lives of sick people and those who care for them.
 
I draw to your attention the commissioned editorial in last week's BMJ by
Alistair Santhouse, who you will be aware was a member of the CG53 GDG.
Please read the attached eBMJ response submitted by Horace Reid, a former
long-serving NHS clinician. It was rejected for publication, a fact that is
revealing in itself, given that it is impeccably accurate.
 
I would ask you in your role as Chairman of NICE to engage fully with our
report and act accordingly to right the long standing wrongs that people
with ME have suffered for the last 20 years.
 
With best wishes,
 
Malcolm Hooper.