UK~ Dept of Health Protest White Paper Consultation
Join us in this UK protest to the "NHS choices White Paper Consultation" which closes Jan 14th, 2011.
On the heels of the UK + London Blood Ban, they know ask us to help them by quickly sending some emails. Please do so ♥
Many of our ME/CFS friends in the UK could REALLY use our Help Right NOW.
If you in the UK, you may write in as a patient.
If not, you may write in as a
Patient Representative/Advocate.
After you read this the white paper linked within this post and written by our friends in the UK that need our Help desperately I have NO doubt that you will be Easily Able and Willing to quickly use their "Sample Letter" to create your own and send it off to the UK to HELP or Fellow Friends that NEED our Help at this IMPORTANT TIME. We ask them for help when we have campaigns, so IMHO, this is one easy way we can help rePay them and help them at the same time. Thank You in Advance for caring about the rest of your ME/CFS Family in the UK.
Your HELP is MUCH Appreciated !!!
♥ Thanks much for helping them so we can actually BE UNITED in our Health CHOICES Around this World regarding HOW those of us that have been abused and mistreated and ignored for DECADES, NOW work HARD to Speak OUR Voices. ♥
Please REPOST Far and Wide!
HOW to take part and HELP.
- Full instructions are in the links BELOW including "a sample cover letter"
NOW IS THE TIME - to say IN THE UK what choices you want for treatment of ME. (please HELP Them)
The NHS are asking us what choices we want in our health care choices (Just as in the USA we are participating with the NIH State of Knowledge) on StoneBirdhttp://www.stonebird.co.uk/
The discrimination and inequality in the current system is unacceptable and a breach of our rights. We call for an end to this
discrimination, and our right to be involved in the planning of our health care services to be honored and the patient`s voice BE HEARD loud and clear.
We hope we have stated the views, concerns and bio-medical needs and choices we want, not only in diagnosis, but also in treatment and social care.
We as patients feel that the Lightening Process (LP) , Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) ARE no LEGIMATE choice at all. We want equal access to appropriate specialists such as neurologists cardiologists, immunologists and a fair diagnosis using the Canadian Guidelines, with correct testing and treatment.
This is the choice WE WANT, not harmful CBT and GET which our shown by patient surveys to worsen our conditions. We condemn the Wessely school and their vested interests, and dominance in the NICE guidelines as an
unfair representation of the facts which leads to discrimination which is why they have been declared unfit for purpose.
The needs of the severely ill are neglected, with no home service often the most in need get the least service. because their
disability does not allow them to access services.
We call for "equal access for the 25% of patients who are severely ill bed and house bound who have no access to choice for ME treatment or any other health care needs."
Correct services need to be provide via
home visits from all specialists involved in care. Otherwise, the severely effected will continue to suffer discrimination in accessing appropriate bio-medical treatments.
************************************** Let your voice be heard loud and clear, the more who reply the stronger the message is for ALL of US all over the World !!!!
Now published ready for downloading and sending with full instructions in pdf
I submit the following document for inclusion in the white paper consultation,
I have submitted research links in the document which support this
submission and ask you not to reach any decision regarding provision of choice for ME patients without fully exploring this evidence.
Yours sincerely,
Your Name
**********************************************
Please Repost Far and Wide
Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD,
Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition
and study. BMC Med. 2005 Dec
15;3:19. Link: http://bit.ly/rfw4i
[2] Fukuda K, Straus SE, Hickie I, Sharpe MC,
Dobbins JG, Komaroff A. The chronic fatigue
syndrome; a comprehensive approach to its
definition and study. Ann Int Med 1994,
121:953-959.
[3] Reeves WC, Jones JF, Maloney E, Heim C,
Hoaglin DC, Boneva RS, Morrissey M, Devlin R.
Prevalence of chronic fatigue syndrome in
metropolitan, urban, and rural Georgia.
Popul Health Metr. 2007 Jun 8;5:5.
[4] Reyes M, Nisenbaum R, Hoaglin DC,
Unger ER, Emmons C, Randall B, Stewart JA,
Abbey S, Jones JF, Gantz N, Minden S,
Reeves WC: Prevalence and incidence of
chronic fatigue syndrome in Wichita, Kansas.
Arch Int Med 2003, 163:1530-1536.
[5] Jason LA, Richman JA, Rademaker AW,
Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S.
A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159
(18):2129-37.
[6] Jason, LA, Najar N, Porter N, Reh C.
Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome
case definition. Journal of Disability Policy
Studies 2008, doi:10.1177/1044207308325995.
Further reading: Leonard Jason, Ph.D.,
DePaul University. Problems with the New CDC
CFS Prevalence Estimates
http://tinyurl.com/2qdgu4 i.e.
--------------------------------------------------------
I'm the first to admit that this isn't
exactly the "catchiest" petition that
has ever been created. One might think
it would be lucky to get a few dozen
responses.
However already, in just over a month,
1633 people have signed (at the time
of writing). Many have left comments
which can be read on the site:
Petition Signatures
[Aside: other people have also left comments
but for some reasons the comments have
not gone up].
I believe this shows the depth of feeling
there is on this issue.
As I said in my last submission, if one looks
at the CFSAC function, it is clear that the
issues relating to the definition are
fairly central.
I listed numerous problems regarding
the definition in my submission to the
May 2009 CFSAC meeting
( http://bit.ly/2CZHKF ) so
I'm not going to repeat them now.I do not believe that Dr Bill Reeves
adequately dealt with the concerns
about the Reeves 2005 criteria in the
last meeting. He said that the
difference between the prevalence rates they
found in Georgia (2540 per 100,000)
compared to previous estimates
(235 and 422 per 100,000) were down
to two issues:
- the different methodology in the Georgia
where they brought in people who did not
complain of fatigue on the telephone screening.
He said that "20-30 percent of people who did
not complain about fatigue endorsed the
Fukuda criteria." However, the paper for
which he is the corresponding author actually
gives a lower figure of 11.5%
["In other words, 11.5% of subjects with
CFS would not have been detected in
previous studies that queried participants
only for fatigue"]. It should also be
remembered that some of these people
might not have satisfied the criteria for
Fukuda as it is normally applied -
the Reeves criteria make it easier to
satisfy the criteria.So the real figure
could well be less than 11.5%. But even
if one takes the figure of 11.5%, that
would only bring the figures of 235 and
422 per 100,000 up to 266 and 479 per
100,000 which are still dwarfed by the
2540 per 100,000 prevalence rate from
the Reeves criteria (2005).
- The other point he starts talking about
in this section is criteria regarding major
depressive disorder so he may have been
trying to make a point with regard to this.
Personally I agree with him and see this as an
important area also! First a quick aside:
there are various forms of depression
e.g. dysthymia, atypical depression, etc.
In the past, apart from bipolar, the main one
excluded was MDDm (melancholic Major
Depressive Disorder), a severe type of
depression. Many people still had depression
but were included as they satisfied the criteria.
With the Reeves (2005) criteria, it says:
"Following recommendations of the
International CFS Study Group, only current
MDDm was considered exclusionary
for CFS." However, part of the specific
recommendations of the International
CFS Study Group [1] that
(Reeves claims his definition is based on)
was that MDDm had to have been resolved
for more than 5 years:
"The 1994 case definition stated that any
past or current diagnosis of major
depressive disorder with psychotic or
melancholic features, anorexia nervosa,
or bulimia permanently excluded a subject
from the classification of CFS ... we now
recommend that if these conditions have been
resolved for more than 5 years before the
onset of the current chronically fatiguingillness, they should not be considered
exclusionary."
It might not be important to point this out
for definitions for some illnesses: however
if one looks at table 2 of the 2005 paper,
6 of the 16 who are said to have CFS using
the "current classification" of CFS, had beendiagnosed with MDDm at a previous
assessmentwhich suggests it is important
in this context.
Also Leonard Jason published a study which
found that 38% of those who haveMajor Depressive Disorder butnotCFS would
satisfy the symptom, fatigue,etc criteria in the Reeves definition.Also the Nater et al. (2009) study found
that 57% had current psychiatric
disorders and 89% had lifetime
psychiatric disorders, suggesting the
definition is picking up a group with
a lot of psychopathology.[Aside: A lot of people have made
suggestions to me speculating why the
CDC broadened the criteria in the way
I have. I do not know the answer.
The most plausible theory to me is the
following: The CDC followed patients in
the community in 1997, 1998, 1999 and 2000.
Between December 2002 and July
2003, they were brought in for intensive testing.
In total, 227 people were invited in,
including 70 who had previously been
diagnosed with CFS. These people went
through very expensive testing -
the whole exercise cost $2m.
However, unfortunately, only 6 out of
the 70 cases of CFS satisfied the Fukuda
definition when they were brought in.
Also 4 more of the other individuals
also satisfied the definition.
If one only excludes people who currently
have Melancholic Major Depressive Disorder
(MDDm) (which was not the recommendation
of the International CFS Study group), one
can get the numbers who satisfy the Fukuda
definition up to 16.
The CDC admit this in their paper
(Reeves, 2005). However 10 (or 16 if one
allows all the MDDm cases) people with CFS
would not be enough for the CDC to publish CFSstudies with a lot of the data they have.
For some of the experiments, people would
not have been suitable for one reason or
another e.g. they were on medication.
Also, often data is not complete or tests
become corrupted so a percentage is lost.
For some of the experiments, gender might
make a difference and one may end up
excluding the men as there might not be
enough patients. So 10 or 16 CFS patients
is not enough to publish CFS papersusing this data. But $2m of the CFS fund
had been spent on this experiment and it
might look like a waste of taxpayers' money
if papers were not published.
The CDC had already gotten into
trouble for misusing the CFS budget
in the past. So the definition of CFS
was expanded so that CFS papers could
be published. So that's one plausible
theory although one does not need to
accept that to believe that the
empirical definition is flawed].Even if for some reason, the CFSAC
do not want to recommend against the
definition, it would be good if you
pressed the CDC to make clear in each
and every paper they write that they
use the empirical criteria, that they
were used. The reference for the
empirical criteria is often not being put
in the list of references. I know the
patients were selected using the
empirical criteria because they are part
of the 2-day Wichita study cohort
or from the Georgia study but most
people reading the papers will not
know this.
--------------------------
2) I think the CDC CFS program should
have to cut its ties with Peter White,
according to its own rules regarding
external reviewers:
At the May 2008 CFSAC meeting, the
following information was given on the
CDC External Peer Review of CFS Program
peer-review of the CFS program in late
summer/early fall 2008. This review will be
conducted by a panel composed of
national and international experts that is
to include representatives from
the Coordinating Center for Infectious
Diseases Board of Scientific
Counselors and CFSAC. CDC is requesting
that CFSAC members recommend names
of experts with no conflict of interest
(direct funding from CDC)" and
Dr. Miller:
"The panel will be external experts in the
field who have no conflict of interest-they
are not receiving CDC funding and
***would not have a direct impact on
the program in its development in stages
other than the recommendations.***"One of the external review panel
(which was small - only 4 people wrote the
report), was Dr Peter White. At the May 2008
CFSAC meeting, Dr Bill Reevessaid: "We talk to Dr. White fairly regularly."It is unclear who nominated Dr. White
to the panel of external reviewers -perhaps the CFSAC could ask this.
It was not the CFSAC as the minutes
show. Dr. Reeves talked as if they might
have been suggested Dr. White be
involved because he was an
"expert on autonomic
nervous system function."
(which is a
curious statement to make given
Dr White is a psychiatrist, whose
PubMed-listed articles do not suggest
he is an expert in this field).
Anyway, the external review panel made the
following recommendations:
"The panelists recommend that the CDC
program urgently consider intervention
studies to help to elucidate the direction
of causality in the several
pathophysiologies identified by the CDC.
This strategy was not articulated
clearly. For example, since both cognitive
behavior therapy and graded exercise
therapies are known to address some of the
abnormalities found, and since both these
therapies have been shown to be efficacious
for CFS, these behavioral interventions should
be seriously considered. Collaborations with
providers and medical schools practised in
randomised controlled trials
might provide the best means to achieve this."
A summary of strategic recommendations
[..]
5. Clinical guidelines on management
should be developed for use in the USA,
by the CDC team in collaboration with
others, and disseminated for CFS.
6. The team needs to consider studies
that test the direction of causality
of pathophysiology, such as using
interventions."At the May 2009 meeting,
Dr Reeves said:
"Peter White, the psychiatrist that
we work with at Emory,""We are in the process of planning a
cognitive behavioral therapy (CBT) and
graded exercise (GET) trial as part of the
provider registry population in Macon.
We're going to do that in collaboration
with the providers in Macon, with Mercer
Medical School, *with the U.K. group*,
and with Mayo Clinic."- "International Workshop -
Research, Clinical, and Pediatric
Definitions of CFS - I would like to try to
get together by the winter of 2009.
I know the IACFS/ME is interested in this.
We want to include countries such as UK
that have CFS care completely integrated
into their healthcare system."
- "Dr. Reeves: An excellent comment.
Our focus is obviously on the United
States. There are three important
reasons for international collaboration.
One of them I alluded to. There are
countries that have put CFS evaluation,
diagnosis, and management into their
national health systems. The UK is one
of those. An international meeting
provides the chance to learn from
another government that has embraced
this illness- perhaps not to the extent
that everybody would like-but is trying
to work with it as a national health
service."
Given that the only representative from the
UK that the CDC has invited to its CFS
meetings since around 2001/2002 is
Peter White, it looks very likely that they have
him in mind for both of these workshops.
Also it looks like he is involved in their
Emory research and may be involved
in the CBT/GET.
Both for the CDC's reputation and
Dr White's, it would be better if the CDC
cuts its ties with him given he took
part in the external peer-review.3) There is potential that who the
individuals the CDC invites to its
upcoming workshops may not be
representative of the spectrum of opinion
amongst experts in the field, based on
the make up of, for example, some
International CFS Study Groups
previously.
The CDC are planning to have three
workshops on CFS (according to their
draft plans):
- International Workshop -
Clinical Management of CFS
- International Workshop -
CFS Case Definition
- Workshop International -
CFS Study Group (Research priorities)
However, it should be remembered that,
for example, what is considered good
management of CFS is a highly disputed
area. Many professionals believe
that Graded Exercise Therapy (GET) and
Cognitive Behavioural Therapy (CBT)
based on GET
"are basically all that patients need."
Symptoms are seen as
largely due to deconditioning and
maladaptive beliefs and behaviours
rather than an ongoing disease process.
I will call these the people of the "CBT
School of Thought."
A few professionals go further and claim that
GET and CBT based on GET can lead to full
recovery. This is a small group but it includes
Peter White (mentioned above) and the
psychologist, Gijs Bleijenberg PhD from the
Netherlands. Both of these professionals,
who many would consider to have
extreme views, have been the sole
representatives from their countries at
workshops the CDC have organised on the
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"Chronic Fatigue Syndrome is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization." - Lauren Hillenbrand, author of #Seabiscuit and #Unbrolen.
THANK ANY Journalist that reports that ME/CFS "is" a SERIOUS Disease, Please!!.
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Documenting the Life of Surviving with ME/CFS and OI/POTS and Invisible Illness since 1987. Back then I got what I thought was a virus and thought I would only be down the usual 7-10 days. WRONG I kept fighting it for a few months, but in the end I had to Surrender to it, which is NOT Easy for someone that has always been very active, a multi-tasker, and a "Get it Done" kind of person my Whole life.
Here I was in the prime of my life about 38 yrs old and going strong until this. then WHAM Bang. I ended up Flat on the living room couch, awake or asleep, for the next 1.5yrs. Living alone I couldn't
even go grocery shopping or I would get the fever back. I was lucky enough to find someone to cook for me once a week. The funny part is that until then I had working in a hospital for the previous 17 yrs, I get sick and they have NO idea what it is. Ran many tests, everything came back normal, so I get NO help/NO disability/nothing.
Even when I did calm things I liked the fever & associated feelings would come back. Yuppie flu? Never was ~ Never will be. Ever known anyone that had EBV ? Well THIS is it's BIG Brother, but a LOT Nastier at this point now 28 years.
I am SO sorry to announce that lately I have had to implement "moderating comments" due to SPAM comments that are trying to come thru, and I do NOT want you OR this blog subject to the type of inappropriate material that these SPAMs contain.. so Please KNOW that I WILL "approve your post" ASAP~ Thanks for your understanding... Hope you will be AWAP ♥ and Even BETTER Soon.
ALERT: If you are posting in a language OTHER than English, "PLEASE use a Google translator to translate it INTO English FIRST." If I can NOT even use the Translator to READ your post... It WILL BE DELETED.
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