Attention DC area posters!

mezombie

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Fred Friedberg, president of the IACFS/ME (an international organization of ME/CFS physicians and researchers) put out this plea today:

What we need is strong attendance at the CFSAC meeting. If we pack the house (we have to fill only 50 seats), that will show that we care about this illness and support all appropriate biomedical research and public policy initiatives that legitimize CFS. If you can attend for even 2 hours that would be helpful.

This message actually got through to me. I may make the effort to attend for at least a short while. I hope others who are in a position to do so will try to do the same. Reviewing the meeting agenda (http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html) is helping me decide when it would be best (giving my limited energy) to attend.

Here is the rest of Friedberg's post:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Important Meeting of the CFS Advisory Committee

on Oct. 29-30 in Washington, DC

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

The CFS Advisory Committee makes recommendations to the Secretary of Health and Human Services regarding government-based CFS research, funding and programs. This is a critical meeting because the future of $25 million in public funding for CFS research at the Centers for Disease Control will be discussed. IACFS/ME wants these funds to be spent on cutting edge biomedical research leading to objective diagnosis and treatment of CFS. We also want CFS to become a public health priority so that issues of stigma and the absence of good medical care are addressed.

The new CFS retroviral study on XMRV in the top tier journal Science shows what can be done to advance the medical research. But this is only a first step. Without follow-up, the momentum we now have will be lost. Only with broad based support from the professional and patient communities will we have a voice in how federal funds for CFS research are spent.

What we need is strong attendance at the CFSAC meeting. If we pack the house (we have to fill only 50 seats), that will show that we care about this illness and support all appropriate biomedical research and public policy initiatives that legitimize CFS. If you can attend for even 2 hours that would be helpful.

For an informative Q and A about the study, click on the link below:

http://www.wpinstitute.org/xmrv/xmrv_qa.html

Fred Friedberg, PhD
President
IACFS/ME
 

Dolphin

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Thanks Susan and Marie for doing this - it's much appreciated.

We particularly need to make this difficult for the CDC and Reeves - they have been going in the wrong direction with their research in recent years. And this could lead to all sorts of problems e.g. bad information going out to doctors in education programs, etc. At the moment, I think their info in their education programs is more neutral - probably better than nothing. But I think they've been taken in by all the hype from British and Dutch psychiatrists and psychologists about GET and CBT based on GET leading to recovery - Bill Reeves even said we don't know for what percentage CBT/GET lead to recovery in the last meeting. Most people would say virtually none except British and Dutch psychiatrists and psychologists!
 
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Hi Susan,

I think I read somewhere that you are staying at the L'Enfant Plaza Hotel? I looked up its location and it looks like an excellent location and a very good price for the location.

My husband and I are staying at a Fairfield out near Dulles (Have some Marriott points and need to stretch them and it was the most reasonable hotel) and taking the 5A bus (costs only $3) into DC and its last stop is L'Enfant Plaza and it looks like we could walk from there if we allow plenty of time for my slow walking. It is about 5-6 DC blocks from your hotel to the HHS building on Independence, or a bit less than the length of the Mall from the Washington Monument to the Capitol and I think I could walk that slowly in about 20-30 minutes. I'm OK as long as I don't get my heart rate up. Taxis from L'Enfant Plaza are another option since they shouldn't cost much.

[Susan: I just stuck a few extra details in to the above paragraph in case it helps anyone else reading this. I know you don't need them since you already have your hotel.]

Would you want any of us to try to meet you briefly at your hotel beforehand, either the evening before or the morning before? Here is my cell: six oh eight, two three nine, eight seven eight nine. Anyone else on the forum is welcome to call me about something relevant, but I tried to keep it from being picked up by those nasty programs that are creating lists. Similarly you can contact me through Ruth [hanging-out-on] learnitec.com.(another disguise since using "at" has become too obvious and is being used by those programs)

I would be happy to hear from anyone planning to attend who wants to get together outside of the meetings. We are driving from Wisconsin--I should say, my dear husband is driving and I am napping--and I'm not sure how early we will get in on Wednesday. I hope by early evening and so we can drive into DC and check things out to make sure there isn't some big construction project just where I am planning to be slowly walking. I am trying not to get too excited about all this so I don't crash and not be able to go. If I'm OK, we will leave Tuesday evening after Paul gets done teaching and stay in South Bend, IN, and then travel all day Wednesday. My cell should work most of the way but it would be better to talk ahead of time this weekend when I have free cell minutes or after 7 pm on weekdays.

What amazing action we are finally seeing. I have had this for about 25 years, after I got really sick while working on a PhD in computer science (which I was never able to finish although I got awfully close). After a few years I got up to about a 6 on Dr. Lerner's scale [which I just learned about--see Cort's blog of 10/21 if you haven't already] and was able to work as a software developer for quite a few years, but a year ago I did some "power walking" as someone--was it you ?--called it, and totally relapsed to what I now realize would be a 2 on his scale and then as I tried to recover ended up as a 0-1 for quite a few months last winter. Now I'm up to about 4-5.

I have learned so much from this forum. I signed up a couple of months ago but only started reading it a couple of weeks ago. Now I realize why my heart rate is so predictive of whether I will crash. I think I will start a new thread on that as soon as I can. Well this has gotten a bit long and maybe I should have sent it as a private message, but I wanted to encourage anyone else who might want to get together in DC to contact me too.

We have much to be grateful for in the efforts of Cort and the WPI and Drs. Lerner, Bell, Friedland, Klimas and quite a number of others. Let's hope we can get the deadwood [Dr. R, etc--sounds a bit like a Kafka novel]out of the way of progress. Then we can celebrate (as long as we don't overdo it!) :)
Looking forward to meeting you.
Best,
Ruth
 

Dolphin

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Well done Ruth (and to your husband too).

Very sorry to hear about the missed PhD that you nearly got.

Don't forget folks that one can also PM (private message) individuals by clicking on their name if you are nervous about giving out too many details. [Aside: Although if everyone does this, it might be hard to get in contact so it might be useful for other people to say they're going even if they don't want to post any more details, if people want to have big meet-ups. Meet-ups would be especially useful if any signs or stickers or the like are being handed out. Anyway, just ignore my waffling and do your own thing!]
 
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DC meeting

Hi Tomk: thanks for the encouragement and condolences (for the dead PhD)and tips. We wish you were able to attend and I know you wish that too. I was amazed when my husband offered to drive us there and now I am really excited about it. Like Susan, I feel that I need to go to represent those who wish they could go and can't. I didn't even try to get a space to talk. Right now I get confused when addressing an audience. And to think I have addressed conference audiences of hundreds with no problem in the past. You refer to rambling. Right now that is MY specialty.
 
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will bring scissors to cut ribbon

Hi Susan:

I'll bring the scissors. I don't know if I'll have a ribbon before I get there, but you should be able to recognize me from my picture which I posted a day or so ago just so you would recognize me, but then I was too tired to write the message until today. It's neat the way, once I uploaded the picture, that it appears with all my posts including the ones I did before I uploaded the picture. I really like this opensource forum package that Cort is using and think I'll put it on my website, if I ever am able to get it together.

I was going to upload a picture of me that I like better that was taken a couple of years ago, but I was afraid you wouldn't recognize me. So I used a picture from a couple months ago so that I should still look like that when I get there, unless I fall on my face between now and then. (unfortunately a possibility, so I'll hold the scissors facing down...:rolleyes: )

I think 8 am in the lobby should be fine right now. If I find out otherwise, I'll let you know. Like if folks want to meet outside the building at a certain time before 9am. I think I'll bring my rolly walker with a seat on it. We can take turns using it if you like. I don't need it all the time, but when I do.... I wonder what we should plan to do for lunch. Does anyone know what is available? Is there a cafeteria in the building? Should we bring our lunch? I think I remember a cafeteria in a museum not far away.

Well I need to retire right now, so I can live to fight another day, or something like that.
 

Dolphin

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Hi Ruth,

It is amazing how many of us have sabotaged our improving health by trying to "power walk"! And doctors not only do not warn us against it they encourage us to do it. That is the main reason I am going to this meeting. I had hoped to be able to speak but I am #4 on standby so I will have to be satisfied with being a spectator.
Sorry to hear that.

My own health was advice to exercise (and following it).

But unlike drugs, adverse reactions to exercise aren't recorded anywhere. And it's such a seductive idea for doctors, etc to hear that what we need to do is keep trying to exercise more that about the only people who "get it" are people with the illness and some of the people they live with.
 

Dolphin

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I don't know if you have looked at the new 5 year plan yet. It looks to me like the CDC is trying to mollify PWC and I am happy that they are making the attempt.
By which bits? The plan seems similar to their draft plan, with a reference to HHV6 and XMRV thrown in (but I haven't done a thorough compare and contrast).
 

Dolphin

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The problem for me is that after living through Straus and then Reeves I just don't trust them at all.
I think you're right not to.

After reading the thing twice I still can't figure out what definition he is using now.
Their version of the Fukuda definition (the empirical criteria (Reeves 2005)) is what they have used for all the studies in recent years. There is no mention they are changing this. There is a workshop in 2010 but they might just invite "yes" people who will agree with them. One of the things I'd like is that other groups would get to select individuals for these international workshops.

I read somewhere that using his new definition the majority of the Georgia study PWC did not know they were sick and worked an average of 48 hours a week!
There are worse things than that e.g. 57% have current psychopathology, 89% have lifetime psychopathology.

And in the 5 year plan, buried beneath some new biological testing is CBT, GET, and Peter White. I can't shake the feeling that the only part of the plan that will ever be instituted is CBT and GET.
I think you could be right.
Also remember that the education programs are very likely to promote GET and CBT based on GET.
"Evidence-based" in the CFS world usually means GET and CBT based on GET as there are not enough RCTs for other interventions.
 

Dolphin

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And in the 5 year plan, buried beneath some new biological testing is CBT, GET, and Peter White. I can't shake the feeling that the only part of the plan that will ever be instituted is CBT and GET. Reeves always makes a big wish list and then funds only what is good for him. I keep seeing that utube video of the kid being tossed from a wheelchair into a swimming pool and sinking like a stone. That was Peter White's doing and I don't want him coming here to "help".
Here is some information on Peter White's views in case anyone hasn't seen it.

If you have sensitivies to chemicals, make sure to look at part (viii) including the references.
======

This is a message I sent to Co-Cure around 2 years ago. It shows where Peter White comes from. Imagine having consensus workshops with him involved! That looks like what the CDC want to do. It appears, they could only go one way.

======


I previously highlighted some points made by the Association of
British Neurologists during the NICE process:

http://tinyurl.com/2mjgh2 i.e.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0708D&L=CO-CURE&P=R2119&I=-3

and highlighted that one can read further submissions at:

"Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders
comments and GDG responses":
http://guidance.nice.org.uk/page.aspx?o=449805
[AOL: <a href="http://guidance.nice.org.uk/page.aspx?o=449805">Here</a>]


However this is a huge mass of information and going back and
comparing it to the original is a lot of work. So I imagine most
people will not do it.


So I thought I'd highlight some comments by St Bartholomew's Hospital
Chronic Fatigue Services. I have done this on a couple of UK lists
and people have been fascinated by what was said.


St Bartholomew's Hospital is often shortened to Barts - this is not a
derogatory abbreviation.


The Barts service is led by the psychiatrist, Prof. Peter White.
Peter White is a major person in the CFS world. He has done much work
in the US in recent years including with the CDC so I thought people
around the world might be interested in some of the points they made.


I have not put comments so people can judge the comments themselves.


Bye,


Tom Kindlon

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

(i) On Disability aids and equipment:

[TK: A blue badge is a disabled parking badge to allow somebody park
in a disabled parking space]

Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

SH St Bartholomew's Hospital Chronic Fatigue Services
69 FULL 183 6.3.6.8
"…equipment and adaptations (for
example, a wheelchair, blue badge or
stairlift)…"
We disagree with this recommendation.
Why should someone who is only
moderately disabled require any such
equipment? Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention? We are in no doubt that it
is a powerful message for a therapist of
any sort to provide such aids. Our view
is that such aids should only be
considered by a multi-disciplinary
therapeutic team as a whole, and
usually in the context of providing a
temporary means for a patient to
ncrease their activity levels. An
example would be providing a wheelchair
for a bed-bound patient as part of
their active rehabilitation programme. In
our opinion, such aids should never be
seen as a permanent solution to
disability in this illness.


NICE:
We have recommended such
equipment only if appropriate, and
as part of an overall management
plan and as an aid to independence.
-----------

Another quote along these lines:
In reply to (Draft NICE text):
1.3.1.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

Barts wrote:
Equipment and aids may hinder
recovery as much as help it, and their
prescription needs to consider both
outcomes. We believe disability aids
can help a patient towards recovery if
their use encourages a widening and
increase in their own activities, on a
temporary basis, as a means of
supporting a rehabilitation
programme. They should rarely if
ever be used for patients with only
moderate disabilities.


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


(ii) On making information available on audio tape:

SH St Bartholomew's Hospital Chronic Fatigue Services
91 FULL 260 13

Why should anyone with concentration difficulties find it easier to
use audiovisual technology, which by your implication does not involve
reading, more than reading itself (from either a book or computer
screen)? Would it not be more effective to negotiate a simple graded
programme of reading to help such a patient improve their reading
ability, along with helping to improve their cognitive capacity
through improving sleep and mood? What might be effective advice is to
encourage the use of voice-activated software in someone who finds
typing using a keyboard physical tiring, and needs to meet a deadline
in their job or studies.


Noted and removed – we consider that the text on including cognitive
activities addresses these points.

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

(iii) On Weight loss in CFS/ME

SH St Bartholomew's Hospital Chronic Fatigue Services
88 FULL 248 6.5.5.2

"Adults or children who experience
severe weight loss should be referred
to a dietitian for assessment, advice
and nutritional support, which in
extreme cases may include tube
feeding."
This is alarming and arguably negligent
advice, which we strongly condemn.
Any patient who experiences severe
weight loss should be referred for
appropriate assessment, not by a
dietician alone, but by an appropriate
specialist doctor (gastro-enterologist or
psychiatrist) so a diagnosis can be
made. We do not know of any reliable
or replicated evidence that severe
weight loss, in deed any weight loss at
all, is a part of CFS/ME. Whereas we
are aware of patients referred to our
service with a diagnostic label of
CFS/ME who on assessment have an
alternative diagnosis, most commonly
anorexia nervosa (sometimes
presenting atypically without a body
image disorder, which is well described
in the anorexia nervosa literature), but,
on occasion, malabsorption.

NICE
This recommendation has been
removed.

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

(iv) On Neuropathetic pain and Gabapentin:

Draft Text:
Gabapentin: The GDG noted that the wider survey was supportive of
gabapentin in severe CFS/ME sufferers. The GDG was uncertain why
this was the case. Because of its side effects, the GDG did not
think that it should be used for mild pain but there will be certain
individual cases when it might be considered despite a relatively
high side-effect profile. The GDG decided not to make a positive or
negative recommendation.

----------
SH St Bartholomew's Hospital Chronic Fatigue Services
87 FULL 233 1

The GDG noted the survey support of
the use of gabapentin in CFS/ME.
However this drug is licensed for
neuropathic pain. There is no evidence
that patients with CFS/ME have a
neuropathy and we would not
recommend the use of this drug,
particularly as one of its significant side
effects is sedation, without empirical
evidence for its support, which is
currently lacking. It would be surprising
if NICE gave guidance based on
anecdotal evidence, an inaccurate
indication, for a drug, which has
significant adverse effects.


NICE Response:
Noted and we have recommended
that people should be referred for
specialist pain management if
appropriate.

====================
(v) Bowel symptoms and CFS/ME:

Draft text:
6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine,
alverine, and peppermint oil) should be considered for adults and
children with bowel symptoms, such as cramp or bloating.

SH St Bartholomew's Hospital Chronic Fatigue Services
85 FULL 229 6.4.5.5
"..gut anti-spasmodics.." are not
treatments of CFS/ME since bowel
symptoms are not part of CFS/ME. You
should make it explicit that this
treatment might be indicated for the
treatment of IBS, if present comorbidly.
Alternatively, and perhaps more wisely,
you could suggest that IBS, if present,
should be treated in the light of the best
available evidence, and refer readers to
appropriate guidance, which may or
may not include considering
antispasmodics as the treatment of
choice for "bloating", although we would
doubt it. You do mention IBS on page
233, line 12.

NICE:
We have revised this
recommendation and referred to the
NICE IBS guideline – currently in
development.

=====================
(vi) On Drug Intolerance and CFS/ME:


Draft text:
6.4.5.2 Adults and children with CFS/ME may experience greater
intolerance and more severe adverse/side effects from drug
treatment. Where appropriate, drug treatment used for symptom
control should therefore be initiated at a lower dose than in usual
clinical practice, and should be increased gradually.

SH St Bartholomew's Hospital Chronic FatigueServices
84 FULL 229 6.4.5.2
We are not aware of any reliable and
replicated evidence to support the
statement that patients with CFS/ME
are more intolerant or have more
severe adverse effects; and "more
intolerant" than whom? We do not
agree that drug treatment should be
initiated at lower dose than in usual
clinical practice. This possible myth is
repeated within the guideline at various
points, and is important since it may
make doctors more likely to prescribe
sub-therapeutic doses. If you are going
to keep this included, you should make
sure that the anecdotal level of
evidence for this is explicitly stated. We
would suggest changing to "..drug
treatment at lower doses may be
considered…."

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

(vii) On Recovery times:

Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
• discuss with the patient ultimate goals with the patient that are
important and relevant to them. This may be, for example a 2 x 15
minutes daily brisk walk to the shop, a return to previous active
hobby such as cycling or gardening, or, if more severely affected,
sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve
goals, and it is essential that the therapy
structure takes this pace of progress into account.

SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16

These goals should include recovery,
not just exercise and activity goals.
If it takes "years" to achieve goals, then
either the goals are wrong or the
therapy is wrong. What other treatment
in medicine would take years to work?
We suggest "or even years" is deleted.
If a therapy is not helping within a few
months, either the therapy or the
diagnosis or both should be reviewed
and changes considered. We suggest
that this advice is pertinent to all
treatment approaches, not just for GET.

NICE:
The statistics indicate that total
recovery is relatively rare and the
GDG felt that to include recovery as
a goal may lead to disappointment.
As the goals are patient derived
they may be long term. Interim
goals would be developed.

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

(viii) on Multiple Chemical Sensitivity (MCS):

Draft text (this is in a section on severe CFS/ME):
"Family life may also be affected as people with severe CFS/ME are
often sensitive to sounds and smell. For example, the person may be
unable to tolerate light or cleaning products whilst they are often
unable to control their body temperature, thus impacting on the living
environment."
and
"..Those caring for an individual with severe CFS/ME professionally
need an understanding of the illness and the needs of the individual
to meet the challenges of, for example, cooking or cleaning for an
individual who is sensitive to the smell of food or of cleaning
materials or bathing an individual who finds touch painful. Therefore
proper training should be given about the condition with the
involvement of the patient for any particular problems."


SH St Bartholomew's Hospital Chronic Fatigue Services
92 FULL 261 3 +

A patient with increased sensitivity to the smell of various
chemicals may be suffering from multiple chemical sensitivity, but
you would be making a dubious assumption to state this is part of or
even characteristic of severely disabling CFS/ME. MCS is a
potentially remediable condition through a graded exposure programme
on the basis that the underlying pathophysiology is a conditioned
response. It should not be considered as a part of CFS/ME.

(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic
environmental intolerance: Part 2: A causation analysis applying
Bradford Hill's criteria to the psychogenic theory. Toxicological
Reviews 2003;22:247-61.

Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O,
Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de
Woestijne KP. Acquiring symptoms in response to odors: a learning
perspective on multiple chemical sensitivity. Annals of the New York
Academy of Sciences 2001;933:278-90.

Otto T, Giardino ND. Pavlovian conditioning of emotional responses
to olfactory and contextual stimuli: a potential model for the
development and expression of chemical intolerance. Annals of the
New York Academy of Sciences 2001;933:291-309.)

NICE response:
This section has been removed.

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

(ix) Point about whether CFS/ME is an incurable chronic disease or not:

Draft text:
1.3.1.6 The objectives of the individualised programme are to:
• sustain or gradually extend, if possible, the person's physical,
emotional and cognitive capacity
• manage the physical and emotional impact of their symptoms.


SH St Bartholomew's Hospital Chronic Fatigue Services
103 NICE 18 1.3.1.6

The emphasis here would be
appropriate for someone suffering
from an incurable chronic disease,
which CFS/ME is most often not. The
aim of an individualised programme
should be to help the patient recover,
or, if this is not possible, to help the
patient improve their quality of life and
minimise disability. The expectation of
both the patient and the practitioner is
vitally important in determining
outcome, and these current aims are
too conservative, and inconsistent
with the best available evidence.

NICE Response:
The Guideline Development Group had
to balance a positive outlook with the
recognition that some people will not
recover.

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

(x) On liasing with employers:

Draft text:
• Healthcare professionals should be proactive in advising about
fitness for work and education, and recommend adjustments or
adaptations to work or studies to enable rehabilitation of adults and
children with CFS/ME. This includes liasing (with the person's
consent) with employers, education providers and support services e.g:
occupational health services


St Bartholomew's Hospital Chronic Fatigue Services
FULL 23 22 thru 27
Sometimes acting as an intermediary
between patient and employer may
encourage dependence rather than
fostering recovery via empowerment.
We therefore suggest adding the
word "may" on line 24 to read, "This
may include…"

==============================
 
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Dear Ruth and others,
PANDORA's representatives will be attending the meeting and we are bringing a hand full of patient advocates to join you on the efforts. I just sent Cort a message. We are going to have some small 8 1/2 X 11 cards that for distribution so patient advocates can hold up during the meeting and during presentations. I will have my MAC lap top with a built-in video that we can record one to one interviews and post on real time on our Youtube.com page. I am also bringing the Empty Chair project pictures in case we don't have a full room which I am hoping we are going to have.
What have you decided you want to have on the signs?

Ruth, there is cafeteria in the building, on the same floor where the meeting is held. We are planning to stake out a few tables near the window as our patient advocacy headquarter during the meeting. We will need folks to monitor the table.
Prices are reasonable etc. Due to the hectic schedule I am in, I haven't been able to read the posts here but I really would like to get a count of everyone who is coming to the meeting so we can show an United front.
Marly
Marly