"As a scientist with 12 years research experience I am shocked at the lack of high quality research in the area of ME/CFS particularly in the area of CBT and GET.
What is extremely worrying is that NICE have used this research to draw up guidelines which will have far reaching implications for patients, and which patient groups strongly reject.
Of particular concern are the small sample sizes, the lack of a systematic approach to aspects of the treatment protocol, such as frequency and number of treatment sessions, and differences in the treatment, if any of the control group.
Rather more worrying is the range and efficacy of the methods used for evaluating the outcomes of the trials, making direct comparison between RCTs (randomised control trials) difficult.
In fact the use of self-reporting questionnaires in ME/CFS studies is in itself controversial, with recent reports showing that there is no correlation between activity scores recorded on an actometer used to measure physical activity (which were lower after treatment with CBT and GET) and the SF-36 scores (self-reported data) [1]
It is extremely concerning that such poor scientific data is being used to recommend treatment that can, as has been shown by a number of patient surveys from the ME Association [2], Action for Me and the 25% group for severely affected to make at least 33% of people more ill.
While such a mismatch between the opinions of patient groups and adequate scientific data exists, patients will, quite rightly continue to reject these guidelines and continue to campaign for higher quality scientific research into this condition.
[1] Friedber F, Sohl, S. Cognitive-behaviour therapy in chronic fatigue syndrome: is improvement related to increase physical activity? J.Clinical Phsychol. 2009 April (in press)
[2] ME Association survey involving over 4,000 people
Dr Anna Sheridan"
4 comments:
Another child suffers terribly because of the lack of biomedical research and effective biomedical treatment,and because of the psychiatrist's stranglehold on a neurological illness:
"Pat Fero via Co-Cure Moderator"
Subject: ACT: Ryan Baldwin - a child in trouble
Hello from Pat Fero, Wisconsin CFS Association:
After our son died on July 4, 2005, I diverted any calls about CFS in
children because I thought that it would be cruel to parents of a kid
with CFS to hear about my experiences. The Baldwin family, Black
Mountain, NC called me late that summer to continue the communication
we had had since 2004. Lisa listened to me describe what happened to
Casey. I was careful to say that the chances of her son having
similar problems would be next to nothing.
Thus, since the fall of 2005, I have talked with Lisa many times.
When problems with Ryan's medical care began to mount, Lisa scanned
MD documents, letters to organizations, politicians, and finally
court documents. I have a file of these documents.
At this time Ryan is in a foster home, the parents charged with
medical abuse and "Fictitious disorder by Proxy." The situation is
entirely unbelievable. Lisa has expanded her website to include the
latest details. http://www.parentsagainstmedicalabuse.com/
Since I am not able to provide anything more, maybe the ME and CFS
community can help. Hence, I summarized a bit of Ryan's story from
Lisa's commentary.
A few things to keep in mind before you read the paragraphs below.
1. Ryan was determined to be medically disabled by Social Security
Administration in 2004 and again in 2008. Ryan did not draw
disability until 2009 because the Baldwin's income disqualified him.
With a reduction in income, they reapplied in 2008 and Ryan's
disability was granted. After receiving his second SSI disability
check this year, Ryan was removed to foster care.
I am in contact with the grandfather who believes that Ryan's
Medicare check now going to the county and his special needs status
that may make him eligible for federal money, is a reason to keep the
child in foster care. I cannot confirm this, but other such schemes
to increase Health and Human Services money have been investigated in
Massachusetts, California, and Texas.
2. The parents have an attorney who is being paid for by a friend.
The family has a NC advocate and it took Lisa well over a year to
find an atty who would take the case. The first hearing was in
January and at that time, Ryan completed a psychiatric test. I have a
copy. No problems were found. The second hearing was in early
February and a third will be in April. The medical reviewer for this
case is a Chapel Hill Pediatrician who gives seminars on child abuse
for CME credit. I question her objectivity about CFS and the obvious
inability to look at the entire medical record.
3. I think this is about the CFS diagnosis and the ignorance of the
medical community. It is also about the family's insistence on
quality care for the child, which means they have filed complaints on
local and state offices for a number of years. The result is to blame
the mother, a common thought with CFS and other unexplained illness
in children. This case is out of control.
Thank you in advance for any steps you might take to help. I so
apologize for the length of this, but I let my letter sit for a week
and seem to be unable to keep it short. I have years of supporting
documentation and I am willing to answer any questions and/or release
documents once I have the approval of the family.
Pat Fero
Wisconsin
_______________________
Help Free Our Son Ryan Michael Baldwin
Please Help. We feel that a problem like this needs to involve our
local community - as without it we lose ourselves.
Please Call or fax NC Governor Bev Perdue and ask her to free
(medically disabled) Ryan Baldwin from DSS abuse. Please ask Governor
Perdue to investigate!
919-733-4240 or fax 919-733-2120
Please contact any reliable media sources and we will talk with them.
We have all the records and nothing to hide.
Ryan is medically disabled and carries a diagnosis of CFS (2004),
severe autonomic dysfunction (2005), a progressive heart conduction
system block (LBBB) with right axis deviation (2008), and
Mitochondrial disease (2008). He has been to Johns Hopkins (2004),
Mayo Clinic (2005), Cleveland Clinic (2006), and was on referral to
UNC Chapel Hill for Mitochondrial disease (2008) when Buncombe County
NC Department of social services (DSS) interfered with all his
medical care. Before and during these years, we have tried to work
with local Primary Care MD's and local specialists.
Ryan was taken from us on 1/23/2009. He was first placed with his
grandparents. That was suspended after 2 weeks because DSS suspected
that they bought into our "fictitious belief" that Ryan is sick and
this made the situation worse for the child. Ryan was taken to a
medical foster care home for 4 weeks and is now 3 hours away from us
in another foster care where we have no access.
Before becoming disabled Ryan was an A student and extremely
educationally gifted. He played on a traveling soccer club at age 10.
After symptoms became severe, Ryan was home schooled at Keystone
National High School and we have paid out of pocket for his
educational program for the past 3 years. He was on target to
graduate next year after completing just three more courses.
Now, in foster care, Ryan receives no educational assistance (Telex
recorder, scribe, help with organizing) with his Keystone program.
DSS states that foster care does not do home schooling.
Buncombe County DSS is now asking Ryan to prove his disabilities to
them. He is held medical hostage at a Warrensville, NC foster home
and is denied appropriate medical care. The wheelchair(s) he uses
daily to conserve energy-- are being kept from him. His old power
wheelchair is in Weaverville, NC at Grandpa's house waiting for
pickup and his manual chair is in the back of a DSS Foster Care
placement Social Worker's car after she forgot to unload it. If Ryan
wanted to go for a walk, he would have no assistance. Furthermore,
Ryan is in a basement bedroom and must climb stairs to get meals or
communicate by phone. There is no wheelchair access.
Of note, his wheelchair attorney fought for Ryan's chair, a power
$22,000 wheelchair for close to 1 year. His new wheelchair deemed
medically necessary by Blue Cross Blue Shield, NC is not available to
him. Ryan has used a power and manual wheelchair for 5 years and
Cigna approved both in 2004. Clearly, he needs these medical aids.
This abuse to Ryan is ongoing while he proves his medical disability
to an uniformed and possibly biased foster parent. We have no idea
what information was provided to the placement parents. The
communication link we had was though Grandpa and that, too, is now
limited because after talking to Ryan numerous times, Grandpa e
mailed the court appointed guardian to ask for help and to complain
about the lack of medical care. Ryan is not holding ground. He is
relapsing. The guardian, in turn, informed the court and now all
calls are put on speakerphone. Grandpa is not allowed to ask about
medical issues. *
Ryan has not seen any friends or family in 7 weeks. His advocates
have not been allowed contact. Ryan misses his dog, his friends, and
us. Ryan has loving family who can accommodate his disabilities. Why
is he not with us?
We deserve better treatment as Buncombe County residents and US
citizens. Our children must not be subjected to such abuse. Please
help our plight and return Ryan Baldwin.
________________________
In my last contact with the grandfather, he told me that any mail
Ryan receives must go to the guardian. I had planned to send the kid
a fruit basket IF I could get the address. Grandpa tells me that
Ryan's diet is limited and nutritional needs are not being met. In
addition, Ryan's phone access, aside from the speakerphone deal, is
limited. The Baldwin's feel like Ryan is in a holding tank. What can we do?
PAT
---------------------------------------------
CBT and CFS study
Researchers at Stony Brook University in New York, have found that in their trial of 11 people with CFS, CBT may help people achieve a healthier balance between activity of rest but may not increase their activity levels. Some were actually less active after the CBT.
The Psychologist, p 19
01/04/09
New Zealand doctor receives Peter Snow memorial award
The 2009 Peter Snow Award for rural health research and service - given annually to honour the memory of Dr Peter Snow, the New Zealand doctor who gained international attention for his research into 'Tapanui Flu', otherwise known as ME – has been given to Dr Garry Nixon.
The presentation was made by health minister Tony Ryall at the New Zealand Rural General Practice Network's annual conference in Wellington yesterday (March 27).
Dr Nixon is a medical officer at Dunstan Hospital in Clyde, South Island, and lecturer at the University of Otago Dunedin School of Medicine, whose research includes the rural management of heart disease, improving access to secondary health care and training for rural hospital specialist doctors.
'Tapanui Flu' entered the lexicon in 1984 when the New Zealand Medical Journal described an unusual outbreak of disease in West Otago, a mountainous sheep-farming region on South Island. The cases were centered on Tapanui, a rural inland town of 5,000 people.
Tapanui's only doctor, Peter Snow, first suspected there might be an outbreak of illness in 1982 "when a number of patients presented with extreme fatigue and a virtual inability to continue with their employment", All but three were under the age of 45. Most were young people and schoolchildren who did not regularly see a doctor. Snow observed that most had been ill for four to six weeks when they came to his clinic.
Snow and fellow collaborator, microbiologist Michael Holmes, investigated and ruled out the idea that the villagers were suffering from a mass hysteria. None of the classic indicators could be found. Instead, they concluded the illness was "a definite entity" with symptoms "consistent with a viral etiology".
Peter Snow became president of the Royal New Zealand College of GPs in 1998-99, receiving their highest honour –a Distinguished Fellowship – in 2001. He died in February 2006, at the age of 71.
Two letters were printed in this week's paper editor of the New Scientist, on the news page. 1/4/09
From: Charles Shepherd, Gawcott, Buckinghamshire, UK:
It is unfortunate that Simon Wessely, interviewed in the article "Mind over body?" (14 March, p 26), attaches a psychosomatic label to chronic fatigue syndrome (CFS) and, by implication, myalgic encephalomyelitis (ME). This inaccurate label not only creates practical problems for patients, such as inappropriate or harmful treatments and refusal of state benefits, it also discourages biomedical research into the underlying cause.
Fortunately, there are clinicians and researchers who believe that ME/CFS has a solid physical basis involving infection, immunology, endocrinology and neurology. As a result, the UK Medical Research Council has recently set up an expert group to look at these areas of causation.
In the UK, the ME Association has just collated results from the largest ever survey of patient opinion, with over 4000 respondents. Over 50 per cent reported that behavioural treatments such as cognitive behaviour therapy and graded exercise therapy were either ineffective or made their condition worse.
New Scientist has previously reported on ME/CFS; one such example was your news report of abnormalities in gene expression in white blood cells (23 July 2005, p 9), which could not be caused by abnormal thought processes. I hope New Scientist will soon regain an objective position on the subject.
From John H. Greensmith, MEFreeForAll.org
I suspect that a large proportion of the "hate mail" you report Wessely as receiving is about the quality of his science, rather than being a personal attack. The science, he says, is what one stands by and it is what many think he falls by.
One result of ME being lumped together with CFS is that it has become more difficult to diagnose. It is also bundled in with several other illnesses, some of which may have a psychiatric origin.
I wonder what Wessely thinks of equally qualified doctors and professors who call for the re-adoption of the name myalgic encephalomyelitis. They recognise it as a discrete neurological illness with a physiological origin that needs further research, and see no particular need for his speciality.
In addition, there have been about 500 online comments posted about the article.
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