Doctor Speedy and ME in search of medical honesty
Thursday, December 31, 2009
Wednesday, December 30, 2009
Sunday, December 27, 2009
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Sunday, December 20, 2009
On the First day of Christmas our False Weasel Gave to M.E. ...
Anonymous said...
On the First day of Christmas our False Weasel Gave to M.E.:
An unscientific somatisation theory
On the Second day of Christmas our False Weasel Gave to M.E.:
Two lithium tablets
and an unscientific somatisation theory
On the Third day of Christmas my False Weasel Gave to M.E.:
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Fourth day of Christmas our False Weasel Gave to M.E.:
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Fifth day of Christmas our False Weasel Gave to M.E.:
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Sixth day of Christmas our False Weasel Gave to M.E.:
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Seventh day of Christmas our False Weasel Gave to M.E.:
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Eighth day of Christmas our False Weasel Gave to M.E.:
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Ninth day of Christmas our False Weasel Gave to M.E.:
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Tenth day of Christmas our False Weasel Gave to M.E.:
Ten uselss CBT sessions
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Eleventh day of Christmas our False Weasel Gave to M.E.:
Eleven harmful Graded Exercises
Ten uselss CBT sessions
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Twelth day of Christmas our False Weasel Gave to M.E.:
Twelve MRC biomedical grant research refusals
Eleven harmful Graded Exercises
Ten uselss CBT sessions
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
- and sectioning under the mental health act for having the neurological illness M.E.
Wishing you a Merry Christmas Dr Speedy, and better health in 2010!
On the First day of Christmas our False Weasel Gave to M.E.:
An unscientific somatisation theory
On the Second day of Christmas our False Weasel Gave to M.E.:
Two lithium tablets
and an unscientific somatisation theory
On the Third day of Christmas my False Weasel Gave to M.E.:
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Fourth day of Christmas our False Weasel Gave to M.E.:
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Fifth day of Christmas our False Weasel Gave to M.E.:
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Sixth day of Christmas our False Weasel Gave to M.E.:
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Seventh day of Christmas our False Weasel Gave to M.E.:
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Eighth day of Christmas our False Weasel Gave to M.E.:
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Ninth day of Christmas our False Weasel Gave to M.E.:
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Tenth day of Christmas our False Weasel Gave to M.E.:
Ten uselss CBT sessions
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Eleventh day of Christmas our False Weasel Gave to M.E.:
Eleven harmful Graded Exercises
Ten uselss CBT sessions
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
and an unscientific somatisation theory
On the Twelth day of Christmas our False Weasel Gave to M.E.:
Twelve MRC biomedical grant research refusals
Eleven harmful Graded Exercises
Ten uselss CBT sessions
Nine fat cats insurers dancing
Eight denials of xmrv
Seven immoral psychiatrists
Six physios a mocking
Five useless meetings
Four jeering G.P.s
Three antidepressants
Two lithium tablets
- and sectioning under the mental health act for having the neurological illness M.E.
Wishing you a Merry Christmas Dr Speedy, and better health in 2010!
Friday, December 18, 2009
Thursday, December 17, 2009
To CBT or not to CBT ...
Anonymous said...
Thanks Dr Speedy for illustrating Chalder's Beach Toilet.
This FINE Complete Bollards Therapy is specifically aimed at helping those pesky M.E. patients who aberrantly believe they have irritable bladders or bowels.
Those patients who wrongly think that they cannot walk to the beach in time to relieve themselves - the bed bound, housebound, and those inland in places such as Birmingham, should immediately be labeled 'afraid of failure' and refused benefits.
Chalder's Beach Toilet has been thoroughly put through its PACEs as part of a multi million MRC funded study. All penguins in Sub-Sharan Africa studied using it are now back at work.
Wednesday, December 16, 2009
Professor Simon Wessely and his CBT logic ...
'The Truth About Penguins'
by Peter Kemp
I wanted to study the nature of penguins
The Canadian definition of penguins is that they are
flightless
they can swim
largest species up to 1.2m tall
they eat mostly fish
they lay 1 or 2 eggs
they generally live in colonies
the 'CDC' definition of these birds is that they are
flightless
they sometimes eat fish
they lay eggs
they can swim
the 'Oxford' definition is that these birds are:
flightless
they lay eggs
The 'Oxford' definition was chosen for the research as the others were too difficult to apply. 100 subjects who met the research criteria were studies in Sub-Saharan Africa.
The research found that penguins:
live in deserts
cannot swim
are up to 2.4m tall
weigh 200 pounds
capable of speeds up to 40mph on land
are mostly vegetarian
Conclusion
The research has discovered the truth about penguins. Those funny black and white birds waddling about the ice and swimming in the sea are making fools of everyone. They are not real penguins and should be excluded from further research into penguins
Tuesday, December 15, 2009
Legionnaires' Disease Outbreak in Miami
The Epic Miami Condo Hotel and Residence building is seen after about 300 guests were relocated due to a legionnaires' disease outbreak in the building on December 14, 2009 in Miami, Florida.
The people were relocated after one guest died and at least two others became sick since October from the disease. An investigation last week by county and state officials revealed that the hotel had installed a water filter that remove chlorine from its city-supplied water which may have allowed bacterial growth.
Monday, December 14, 2009
Saturday, December 12, 2009
The Medical Research Council’s secret files on ME/CFS
Margaret Williams, 10th December 2009
It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead
As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?” ( http://health.groups.yahoo.com/group/MEActionUK/; 14th October 2009).
The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but ...
It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead
As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?” ( http://health.groups.yahoo.com/group/MEActionUK/; 14th October 2009).
The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but ...
Friday, December 11, 2009
Tuesday, December 8, 2009
What is M.E. or Myalgic Encephalomyelitis
The Nightingale Research Foundation
Byron M. Hyde, M.D.
M.E. can be either epidemic or sporadic, but always is characterized by its acute
onset. M.E. was first called Benign Epidemic Myalgic Encephalomyelitis, benign simply
because the epidemics were only infrequently associated with patient death. However,
deaths did occur.
Deaths were documented in the 1934 Las Angeles, the 1947 Iceland epidemics and the 1955 Cumberland epidemics. Over 60 M.E. epidemics have been described. Benign was soon dropped due to the severe and chronic disability associated with this illness.
One important clue as to the CNS injury occurred in the Iceland epidemics circa 1947
when three children fell ill and died of Parkinson-like illness. The three children were all
younger than 10 years of age, strongly suggesting that M.E. in the Iceland Akureyri
epidemic was associated with an injury of the CNS in the basal ganglia area of the brain.
<...>
It has been shown that the normal accelerated antibody response to viral or
immunological invasion is blocked in M.E. with the significantly decrease in number and
activity of NKC (Natural Killer Cells), the primary response to infection. This failure of
the NKC system allows the viral or immunological pathogen to persist for a sufficiently
long time that this infectious pathogen is recognized as self, not susceptible to the normal
human antibody response.
This blocking of the normal immune or inflammatory
response, allows the pathogen to cause long standing disease of multiple organs,
particularly the CNS (Central Nervous System = brain+ spinal cord), muscle, vascular
systems of the body and to a lesser extent various other organs and systems.
Not until the 1984 North American epidemics, that continued on up until 1989 in large
numbers, usually peaking during the August to Christmas periods was there physiological
brain imaging in place to ascertain brain injury.
It was shown that a significant majority of these epidemic, cluster and sporadic patients had persistent pathophysiological hypoperfusion brain changes that could be measured by brain SPECT and brain PET. D
The Injury to the CNS is not a theory: In M.E. the irregular diffuse attack upon the
CNS (central nervous system) can be measured by various techniques first noted by Drs.
Jay Goldstein and Ismael Mena in California in 1998. They pathological findings include abnormal persisting changes in:
(a) Brain SPECT (Single Photon Emission Computed Tomography)
(b) Quantitative EEG (QEEG Scan or BEAM Scan in the USA) or
(c) Brain PET (Positron emission tomograph) and even the inexpensive
(d) Transcranial Doppler as developed at Harbor View Hospital in Seattle.
(e) Neuropsychological Testing
Byron M. Hyde, M.D.
M.E. can be either epidemic or sporadic, but always is characterized by its acute
onset. M.E. was first called Benign Epidemic Myalgic Encephalomyelitis, benign simply
because the epidemics were only infrequently associated with patient death. However,
deaths did occur.
Deaths were documented in the 1934 Las Angeles, the 1947 Iceland epidemics and the 1955 Cumberland epidemics. Over 60 M.E. epidemics have been described. Benign was soon dropped due to the severe and chronic disability associated with this illness.
One important clue as to the CNS injury occurred in the Iceland epidemics circa 1947
when three children fell ill and died of Parkinson-like illness. The three children were all
younger than 10 years of age, strongly suggesting that M.E. in the Iceland Akureyri
epidemic was associated with an injury of the CNS in the basal ganglia area of the brain.
<...>
It has been shown that the normal accelerated antibody response to viral or
immunological invasion is blocked in M.E. with the significantly decrease in number and
activity of NKC (Natural Killer Cells), the primary response to infection. This failure of
the NKC system allows the viral or immunological pathogen to persist for a sufficiently
long time that this infectious pathogen is recognized as self, not susceptible to the normal
human antibody response.
This blocking of the normal immune or inflammatory
response, allows the pathogen to cause long standing disease of multiple organs,
particularly the CNS (Central Nervous System = brain+ spinal cord), muscle, vascular
systems of the body and to a lesser extent various other organs and systems.
Not until the 1984 North American epidemics, that continued on up until 1989 in large
numbers, usually peaking during the August to Christmas periods was there physiological
brain imaging in place to ascertain brain injury.
It was shown that a significant majority of these epidemic, cluster and sporadic patients had persistent pathophysiological hypoperfusion brain changes that could be measured by brain SPECT and brain PET. D
The Injury to the CNS is not a theory: In M.E. the irregular diffuse attack upon the
CNS (central nervous system) can be measured by various techniques first noted by Drs.
Jay Goldstein and Ismael Mena in California in 1998. They pathological findings include abnormal persisting changes in:
(a) Brain SPECT (Single Photon Emission Computed Tomography)
(b) Quantitative EEG (QEEG Scan or BEAM Scan in the USA) or
(c) Brain PET (Positron emission tomograph) and even the inexpensive
(d) Transcranial Doppler as developed at Harbor View Hospital in Seattle.
(e) Neuropsychological Testing
Monday, December 7, 2009
Sunday, December 6, 2009
Zidovudine or AZT
From Wikipedia, the free encyclopedia
Zidovudine (INN) or azidothymidine (AZT) (also called ZDV) is a nucleoside analog reverse transcriptase inhibitor (NRTI), a type of antiretroviral drug. It was the first approved treatment for HIV. It is also sold under the names Retrovir and Retrovis, and as an ingredient in Combivir and Trizivir. It is an analog of thymidine.
AZT use was a major breakthrough in AIDS therapy in the 1990s that significantly altered the course of the illness and helped destroy the notion of the 1980s and early 90s that HIV/AIDS was an instant death sentence.
Zidovudine was the first drug approved for the treatment of AIDS and HIV infection. Jerome Horwitz of Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine first synthesized AZT in 1964[1][2], under a US National Institutes of Health (NIH) grant. AZT was originally intended as an anticancer drug, but was shelved after it proved insufficiently effective against tumors in mice.[3]
In 1974 W. Ostertag from the Max Planck Institute in Germany provided some evidence that AZT was active in a mouse retrovirus culture system.
<..>
The time between the first demonstration that AZT was active against HIV in the laboratory and its approval was only 25 months, which is one of the shortest periods of drug development in recent history.
Zidovudine (INN) or azidothymidine (AZT) (also called ZDV) is a nucleoside analog reverse transcriptase inhibitor (NRTI), a type of antiretroviral drug. It was the first approved treatment for HIV. It is also sold under the names Retrovir and Retrovis, and as an ingredient in Combivir and Trizivir. It is an analog of thymidine.
AZT use was a major breakthrough in AIDS therapy in the 1990s that significantly altered the course of the illness and helped destroy the notion of the 1980s and early 90s that HIV/AIDS was an instant death sentence.
Zidovudine was the first drug approved for the treatment of AIDS and HIV infection. Jerome Horwitz of Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine first synthesized AZT in 1964[1][2], under a US National Institutes of Health (NIH) grant. AZT was originally intended as an anticancer drug, but was shelved after it proved insufficiently effective against tumors in mice.[3]
In 1974 W. Ostertag from the Max Planck Institute in Germany provided some evidence that AZT was active in a mouse retrovirus culture system.
<..>
The time between the first demonstration that AZT was active against HIV in the laboratory and its approval was only 25 months, which is one of the shortest periods of drug development in recent history.
Xenotropic murine leukemia virus-related virus is susceptible to AZT.
Sakuma R, Sakuma T, Ohmine S, Silverman RH, Ikeda Y.
Department of Molecular Medicine, Mayo Clinic, 200 First Street SW, Rochester, MN 55906, USA.
The xenotropic murine leukemia virus-related virus (XMRV) is a human retrovirus, recently isolated from tissues of prostate cancer patients with impaired RNase L activity.
In this study, we evaluated 10 licensed anti-HIV-1 compounds for their activity against XMRV, including protease inhibitors (PI), nucleoside reverse transcriptase (RT) inhibitors (NRTI), non-nucleoside RT inhibitors (NNRTI) and an integrase inhibitor.
No PI affected XMRV production; even high concentrations of Ritonavir failed to inhibit the maturation of XMRV Gag polyproteins. Among the NRTI, NNRTI and integrase inhibitors used in this study, only AZT blocked XMRV infection and replication through inhibition of viral reverse transcription.
This sensitivity of XMRV to AZT may be explained by the modest homology in the motif D sequences of HIV-1 and XMRV reverse transcriptases. If XMRV becomes established as an etiological agent for prostate cancer or other diseases, AZT may be useful for preventing or treating XMRV infections in humans.
Saturday, December 5, 2009
All Party Parliamentary Group on ME: people with ME/CFS continue to be badly treated
The ME Association, Thursday, 03 December 2009 10:43
"The interim report of the All Party Parliamentary Group on ME inquiry into NHS services for people with ME/CFS was launched at the group's meeting in the Commons yesterday (Wednesday 2 December 2009).
In a press statement issued after the meeting, APPG chairman Dr Des Turner MP said the evidence submitted to the group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.
Dr Turner said: “Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of general practitioners to recognise the disease or diagnose it."
“We found unacceptable variation in provision between different health trusts which needs to be addressed.”
The parliamentarians said that people with ME/CFS continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.
The interim report and recommendations can be read by clicking here.
The ME Association hopes to be publishing its own response to the interim report later today. When it is available, it will be published at this website."
"The interim report of the All Party Parliamentary Group on ME inquiry into NHS services for people with ME/CFS was launched at the group's meeting in the Commons yesterday (Wednesday 2 December 2009).
In a press statement issued after the meeting, APPG chairman Dr Des Turner MP said the evidence submitted to the group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.
Dr Turner said: “Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of general practitioners to recognise the disease or diagnose it."
“We found unacceptable variation in provision between different health trusts which needs to be addressed.”
The parliamentarians said that people with ME/CFS continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.
The interim report and recommendations can be read by clicking here.
The ME Association hopes to be publishing its own response to the interim report later today. When it is available, it will be published at this website."
Friday, December 4, 2009
Got CFS? Dr. Oz Tackles the XMRV Virus
BY Dr. Jacob Teitelbaum, M.D.:
"On Thursday’s show (12/3), Dr. Oz did a great job introducing the new research showing the presence of XMRV viral infections in CFS (Chronic Fatigue Syndrome). As the earlier show I appeared on focused on general fatigue, I have been encouraging Dr. Oz to do a segment focusing on CFS, and on XMRV in particular, and I think he did an excellent and compassionate job!
The XMRV research has a number of important implications:
1. CFS is validated within the mainstream medical community as a real, physical and devastating illness.
The XMRV virus study clearly documents that CFS is a real and physical illness, again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific nitwits.
Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should help speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness!
2. Testing.
Information on doing the XMRV virus blood tests can be found at VIPDX (order the XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND). The cost is $650, and the profits from the test will help support the Whittemore Peterson Institute (WPI), which sponsored the XMRV study and is playing an outstanding role in CFS advocacy.
The testing will not immediately effect most people’s treatment and it is not clear if insurance will cover it yet, so it is OK for those who can’t afford the testing to wait (you will benefit from others who do the testing and thereby further help us understand the illness). For those who have doctors, insurance companies, or family that are skeptical about their illness, this offers a good reason to do the testing.
Also, it is reasonable to simply do it to see what it shows. Do both tests in the XAND panel though, as one test being negative does not mean the infection is not there. You don’t need the grief of a “false negative” test.
A negative panel does not mean you don’t have the illness, so don’t panic if your test is negative. We’ll discuss test interpretation more over time.
3. XMRV Virus Treatment.
This is where perspective is critical. Although there are a number of antiviral medications for retroviruses (because of AIDS research), we do not know which ones will work against XMRV or in what combination. It will take at least a few years for research to answer this question (and possibly many years). Because of this, it is important that we harness the power of the Internet and the CFS community to begin to answer this question more quickly (which will also help guide future research).
Although I recommend people begin with other proven treatments (see below) while this issue is addressed, knowing the CFS community to have many wonderful cutting edge activists, people will be trying different mixes of anti-retroviral “cocktails” anyway.
If any of you try these, please post your experience with the treatments (include the medication names and doses, how long used, whether or not it worked and side effects) on our End Fatigue community discussion board. I invite you to note this information even when you first start treatment, and update our community occasionally so that we can follow along with you. We would like to hear your experiences whether or not the treatment has helped you.
Meanwhile, there is a lot that you can do NOW to start feeling better.
4. Treatment — What Can I Do NOW?
The good news is that there is a lot you can do now to both feel better and probably suppress the virus. As Dr. Oz noted, about 4% of the healthy population is XMRV positive, and only about 1% have CFS. This means that a healthy immune system can often suppress the virus (only about 20% of those with the virus get sick), which is really good news! Our published placebo controlled study shows that, on a scale of 0 to 10 (with 0 being “dead” and 10 being “perfectly healthy”), the average CFS patient improved from a 3.5 to a 6.2 score at 3 months and to almost a 7 score at 2 years (by which time most people had improved to where they could wean off of most treatments). Treatment was based on our “SHINE Protocol.” (Our free symptom analysis program can determine what treatments will help YOU feel the best, as specific treatments vary quite a bit from person to person.)
Doctors at the Fibromyalgia and Fatigue Centers (FFC) are staying up to date on XMRV testing and treatment, and we are adding the information into our diagnostic and treatment protocols as it becomes available. Our antiviral IV treatments have also been very helpful for many FFC patients over the years.
There is good reason for hope in this new research, and the good news is that there is also a lot that you can do NOW!
We will keep you informed ;-)
Love and Blessings,
Dr. T"
"On Thursday’s show (12/3), Dr. Oz did a great job introducing the new research showing the presence of XMRV viral infections in CFS (Chronic Fatigue Syndrome). As the earlier show I appeared on focused on general fatigue, I have been encouraging Dr. Oz to do a segment focusing on CFS, and on XMRV in particular, and I think he did an excellent and compassionate job!
The XMRV research has a number of important implications:
1. CFS is validated within the mainstream medical community as a real, physical and devastating illness.
The XMRV virus study clearly documents that CFS is a real and physical illness, again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific nitwits.
Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should help speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness!
2. Testing.
Information on doing the XMRV virus blood tests can be found at VIPDX (order the XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND). The cost is $650, and the profits from the test will help support the Whittemore Peterson Institute (WPI), which sponsored the XMRV study and is playing an outstanding role in CFS advocacy.
The testing will not immediately effect most people’s treatment and it is not clear if insurance will cover it yet, so it is OK for those who can’t afford the testing to wait (you will benefit from others who do the testing and thereby further help us understand the illness). For those who have doctors, insurance companies, or family that are skeptical about their illness, this offers a good reason to do the testing.
Also, it is reasonable to simply do it to see what it shows. Do both tests in the XAND panel though, as one test being negative does not mean the infection is not there. You don’t need the grief of a “false negative” test.
A negative panel does not mean you don’t have the illness, so don’t panic if your test is negative. We’ll discuss test interpretation more over time.
3. XMRV Virus Treatment.
This is where perspective is critical. Although there are a number of antiviral medications for retroviruses (because of AIDS research), we do not know which ones will work against XMRV or in what combination. It will take at least a few years for research to answer this question (and possibly many years). Because of this, it is important that we harness the power of the Internet and the CFS community to begin to answer this question more quickly (which will also help guide future research).
Although I recommend people begin with other proven treatments (see below) while this issue is addressed, knowing the CFS community to have many wonderful cutting edge activists, people will be trying different mixes of anti-retroviral “cocktails” anyway.
If any of you try these, please post your experience with the treatments (include the medication names and doses, how long used, whether or not it worked and side effects) on our End Fatigue community discussion board. I invite you to note this information even when you first start treatment, and update our community occasionally so that we can follow along with you. We would like to hear your experiences whether or not the treatment has helped you.
Meanwhile, there is a lot that you can do NOW to start feeling better.
4. Treatment — What Can I Do NOW?
The good news is that there is a lot you can do now to both feel better and probably suppress the virus. As Dr. Oz noted, about 4% of the healthy population is XMRV positive, and only about 1% have CFS. This means that a healthy immune system can often suppress the virus (only about 20% of those with the virus get sick), which is really good news! Our published placebo controlled study shows that, on a scale of 0 to 10 (with 0 being “dead” and 10 being “perfectly healthy”), the average CFS patient improved from a 3.5 to a 6.2 score at 3 months and to almost a 7 score at 2 years (by which time most people had improved to where they could wean off of most treatments). Treatment was based on our “SHINE Protocol.” (Our free symptom analysis program can determine what treatments will help YOU feel the best, as specific treatments vary quite a bit from person to person.)
Doctors at the Fibromyalgia and Fatigue Centers (FFC) are staying up to date on XMRV testing and treatment, and we are adding the information into our diagnostic and treatment protocols as it becomes available. Our antiviral IV treatments have also been very helpful for many FFC patients over the years.
There is good reason for hope in this new research, and the good news is that there is also a lot that you can do NOW!
We will keep you informed ;-)
Love and Blessings,
Dr. T"
Thursday, December 3, 2009
Professor Wessely and ME ...
Dear Professor Wessely,
I would like to ask you a question.
This squirrel, just popped by.
Is this what the PACE trial is all about?
Kind regards,
Dr. Speedy
Wednesday, December 2, 2009
Tuesday, December 1, 2009
Swine flu vaccine and ME/CFS
BY: Dr Charles Shepherd
Hon Medical Adviser, ME Association
"The ME Association is continually updating its website information and guidance for people with ME/CFS in relation to swine flu, Tamiflu and swine flu vaccination.
We are also asking for feedback from people who have been given swine flu vaccine. Feedback so far has been limited due to the fact that some doctors do not accept that ME/CFS could be a high priority illness fot vaccination purposes.
Consequently, most of the feedback has been from people who have had the vaccine for employment purposes (eg health service staff) or they have another illness that is clearly in the NHS high priority list (eg asthma).
We have had 16 replies so far.
Overall, most people have reported relatively minor problems with the vaccine. And one person (severe ME) had no problems at all.
One or more 'minor' adverse reactions, in particular local soreness and sometimes swelling at the injection site, have been frequently reported. Other 'minor' adverse reactions include feeling feverish, headaches, nausea and wanting to sleep more than normal. The majority of people have also had what appears to be a temporary exacerbation of their ME/CFS fatigue +/- joint or muscle pain.
However, three people (3/16) have reported a more prolonged and serious exacerbation/relapse of their ME/CFS.
Of particular concern is a single report of a previously fit adolescent who has developed a number of ME/CFS type symptoms four days after his vaccination.
Whilst this link to the vaccination may be pure co-incidence, we do know that ME/CFS can occasionally be triggered by vaccinations, including the normal flu vaccine. This case is being reported to the Medicines and Healthcare products Regulatory Authority (MHRA) by The MEA on the Yellow Card reporting system. And it is very important to make sure that doctors in the UK report all suspected adverse events to swine flu vaccination to the MHRA.
The MEA will continue to monitor the response of people with ME/CFS to swine flu vaccine.
If you have been vaccinated, please let us know what happened afterwards. Email us here."
Hon Medical Adviser, ME Association
"The ME Association is continually updating its website information and guidance for people with ME/CFS in relation to swine flu, Tamiflu and swine flu vaccination.
We are also asking for feedback from people who have been given swine flu vaccine. Feedback so far has been limited due to the fact that some doctors do not accept that ME/CFS could be a high priority illness fot vaccination purposes.
Consequently, most of the feedback has been from people who have had the vaccine for employment purposes (eg health service staff) or they have another illness that is clearly in the NHS high priority list (eg asthma).
We have had 16 replies so far.
Overall, most people have reported relatively minor problems with the vaccine. And one person (severe ME) had no problems at all.
One or more 'minor' adverse reactions, in particular local soreness and sometimes swelling at the injection site, have been frequently reported. Other 'minor' adverse reactions include feeling feverish, headaches, nausea and wanting to sleep more than normal. The majority of people have also had what appears to be a temporary exacerbation of their ME/CFS fatigue +/- joint or muscle pain.
However, three people (3/16) have reported a more prolonged and serious exacerbation/relapse of their ME/CFS.
Of particular concern is a single report of a previously fit adolescent who has developed a number of ME/CFS type symptoms four days after his vaccination.
Whilst this link to the vaccination may be pure co-incidence, we do know that ME/CFS can occasionally be triggered by vaccinations, including the normal flu vaccine. This case is being reported to the Medicines and Healthcare products Regulatory Authority (MHRA) by The MEA on the Yellow Card reporting system. And it is very important to make sure that doctors in the UK report all suspected adverse events to swine flu vaccination to the MHRA.
The MEA will continue to monitor the response of people with ME/CFS to swine flu vaccine.
If you have been vaccinated, please let us know what happened afterwards. Email us here."