Friday, July 3, 2009

Medical School Scholarships

Hello,

A few days ago, the WI ME/CFS Association announced that we were able
to offer the Friedman Scholarship to second year medical students in
Madison, Wisconsin.

Just prior to this I had a most enlightening conversation with Betty
McConnell, a long time children's advocate from New Jersey. She has
been working with families and their kids with ME/CFS AND keeping
records for over 10 years. The NJ group has a long list of firsts and
among them is this pioneering of work with kids. As you know, more
attention is on children with the new case definition, a bit more
research and controversy.

During  our conversation, Betty told me that the medical scholarship
was an idea she had many years ago, but she was too sick to follow
through, so Dr. Ken Friedman and the NJ board took over to figure out
the logistics of how to make it happen. Here is an example what state
groups can do. It is slow. It is hard, but they got it done. Dr.
Friedman presented the medical scholarship idea at the CFSAC  a few
years ago and I picked up information. From this point it took us two
years to talk about it, to get the University medical school okay,
and to adapt the NJ documents to Wisconsin.

In the meantime, other state groups began the process. (If I could
remember which groups or what stages they are at I would name them.)
Basically, students write on a challenge question about ME/CFS and
the best research essay wins the scholarship. This gives the
community X number of CFS  educated students who will turn up in a
few years in a clinic to help us.  In addition, to keep the
scholarship going, money must be raised, but it is much easier to do
this for medical education than for other projects.

When we made the scholarship announcement, it was with pride and
relief because it is so hard to have 15 good plans and finally get
one done.  I said that the idea originated with Ken Friedman, when in
fact it was Betty and the NJ board with Ken who worked through the
process. Betty and I talked about getting credit and she is not one
who seeks it. I think it is not a matter of credit, but fact finding;
hence I amend our announcement.

LASTLY, other states can adopt and adapt the same idea because we
have a pattern to follow and people to ask about how to follow the
process. Imagine a 2009 where state to state we had ME/CFS groups
involved with collaborative efforts? Maybe because of the work
involved in organizing by people sick everyday, this is a pipe dream.
I think interested people give up because they focus on the 14 ideas
let go rather than the one followed up on, which is a win. ALL groups
and individual advocates have a piece of this advocacy, education,
helping puzzle, and no effort should go unnoticed if we can help it.
It is so hard to sustain an effort.  SO, THANKS TO YOU ALL especially
to those who maintain news lists, as well as offer patients
mechanisms to share information.


PAT FERO
______________________________________________________________


The original announcement as posted on Co-Cure a few weeks ago:

The WISCONSIN ME/CFS Association announces Medical Student
Scholarship (the Friedman Award)


The Wisconsin Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Association (WME/CFSA) is announcing the creation of the Friedman
Medical Student Scholarship Award. The purpose of this scholarship is
to encourage medical students to learn about ME, CFS, and similar
illnesses.  In naming this scholarship, our Association is honoring
Kenneth Friedman, PhD, who originated the idea of the scholarship and
who has successfully spread the idea beyond his own state of New
Jersey. Mr. Friedman has also been active in other ways in promoting
research and scholarship about ME/CFS.


The Friedman Medical Student Award is open to all students who have
completed their first year of medical school in Madison, Wisconsin,
are enrolled for their second year of medical school, and are in good
academic standing. The Friedman Award is not a financial need scholarship.


Students will write an essay answering this year's challenge question
about ME/CFS. We hope that the process of writing the essays for this
scholarship, and possibly being the winner of it, will contribute to
applicants becoming physicians better able to assist and provide
compassionate care for patients suffering from ME/ CFS and similar,
complex illnesses with no known cures.


The winner of the scholarship shall receive a $3,000 award to be
applied toward the tuition of his/her second year of medical
education. If you have any questions regarding the ME/CFS Medical
Student Scholarship application, the WME/CFSA, please contact Pat
Fero, MEPD, Executive Director of the Wisconsin ME/CFS Association at
fero.pat@gmail.com  or (608) 834 1001, or (608) 837 9540
 

 

Wednesday, July 1, 2009

Sometimes Visualizing is Not Enough

They always tell you to visualize yourself as getting well, and it will happen.
 
Well, let me tell you something about visualization: it's not enough.  I have been visualizing something for a few years, and it hasn't happened.  It's not about getting well, it's something else that I've wanted to happen in my life. 
 
Some things required for this to work are things that other people have to do as part of their jobs; there's nothing I can do to make them do it or not do it, because I don't have that kind of influence over them.  I can ask, but I cannot demand; it's their decision to make, and the decision they made was not the one required for my visualization to become reality.
 
This definitely was not one of those things where I could visualize myself succeeding AND then do the necessary steps to succeed, because most of the necessary steps were out of my control. 
 
For years, I visualized myself getting well, demanded the necessary pills, and was refused what I needed because the doctors inexplicably wanted to prescribe something else; I saw half a dozen doctors and still had not gotten the right pills.   I did everything that I could, but I could not get well if the doctors weren't helping me by doing their part, the one part that I could not do for myself: writing prescriptions.  
 
And this is often the problem with visualization exercises: you can do your very best, but if success relies on other people and those people don't want to cooperate or think their way is better, you're not going to succeed because they're putting roadblocks in your way.  You don't need the stress of beating yourself up when what you visualized doesn't come true, when you've actually done all you could.  As a friend often reminds me "God answers all prayers; sometimes, the answer is No."
 
Visualization has its uses, but it's not always the guaranteed solution to getting what you want; sometimes, it's just a fantasy.
 
 
 
 
 
 
 

Fraud

There's so much concern about whether people like me, who can work a little, are defrauding the government when we apply for SSI benefits -- here's another episode of who is REALLY committing the fraud.  I would have to collect benefits for over 1500 years in order to get as much government money as these two doctors!
 
But, as we all know, it's easier to pick on the weak and helpless, the disabled (some of whom, like me, are disabled because of doctors' incompetence) than it is to go after the rich and powerful who commit the really big-dollar crimes:
 
"Some doctors are so greedy, they'll recruit patients to be diagnosed with fictional diseases, then they'll forge paperwork to bill Medicare for millions of dollars worth of treatments that were never even provided.  Such is the case with two American doctors busted this week in Miami, where they bilked taxpayers for $20 million in fraudulent fees for "HIV infusion" services they never performed.  But this is no aberration: Read my story today to learn why there is a culture of crime and fraud that permeates western medicine today:
http://www.naturalnews.com/026531_doctors_health_medicine.html "
 
Where is the huge outcry for the reform of the Medicare system to prevent this from happening?  Why is the only concern for reforming the disability system to make it even harder for people who are legitimately disabled to get the benefits they're legally entitled to?
 
 

Tuesday, June 30, 2009

More Hope for People with Fibromyalgia

More Hope for People with Fibromyalgia
 
The Spring/Summer 2009 issue of the www.CFIDS.org print publication has arrived and has an article on the new fibromyalgia drugs, Lyrica, Cymbalta and Savella.    If you think these medications might help you, but you can't afford them, visit www.PPARx.org, which links you to nearly 500 patient assistance programs.
 
"Big-budget national advertising campaigns to expand awareness of FM and demand for Lyrica and Cymbalta have drawn criticism from journalists and people inside the medical community. ... the backlash is likely a consequence of increased awareness of a condition that has been misunderstood for too long...."
 
My opinion is that the backlash is a consequence of people being confronted with the fact that what they had always believed was wrong.  Many people have difficulty in accepting they've made a mistake.  For decades, they've been convinced that fibro patients are merely lazy whiners, but now there's research showing their brains really do process pain differently, the FDA has approved medication for the condition, and all these ads are making it impossible to cling to old, outdated beliefs without being revealed as ignorant and hidebound.  This is their last-ditch attempt to "prove" they're right before being forced to change their minds.
 
Kevin P. White, M.D., Ph.D., Rheumatologist and Epidemiologist asks "Why do those who belittle the concept of FM offer virtually nothing more of an argument than their own feeble versions of "common sense," while repeatedly ignoring a huge and ever-growing body of evidence supporting its legitimacy?"
 
I expect the same blizzard of last-hurrah negative press when the overwhelming evidence that CFS is not depression becomes common knowledge.  Doctors who feel their intelligence and arrogance are threatened by the revelation that their long-time beliefs are in error will indulge in one final round of Blame The Patient.
 

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd.
                                              - Bertrand Russell
 


 
 
 

Monday, June 29, 2009

Results from 10 ME/CFS surveys

Thanks, Tom, for more good statistical work!
(May be re-posted)


I'm just doing a relatively quick submission to the CDC on their 5-research
plan which involves an estimated budget of US$20m over that period. Bill
Reeves seems to have been taken
in the proponents of the therapies, Graded Exercise Therapy (GET) and CBT
based on GET. I am thus concentrating largely on this issue so they will
have been warned if they then promote dangerous treatments especially if
they do it without warnings.


I'm pointing out that with pharamaceutical drugs reports of adverse reaction
are taken seriously and that warnings are given out about these adverse
reactions (or in some cases drugs are taken off the market if the
risk/benefit ratio is unsatisfactory). However, with
non-pharmaceutical interventions (particularly for CFS) information is
rarely if ever formally
collated and also generally it is less easy for patients to report adverse
reactions.


I'm saying that in this situation, surveys of patients' experiences are
important.
I'm including details from 10 from the following countries: UK (6), the
Netherlands (2), Norway (1), USA (1).


I'm appending what I've written on the surveys below. If anyone has
information on other surveys, feel free to send them on. I will probably
send out my completed submission so people will then see a fuller list of
surveys if I have missed some.


Even if people don't get to write to me in the next 24 hours, I will still
be interested in other data.


I'm also pointing out that the CFS experts the CDC are using from the UK and
the
Netherlands may not be telling them about the reports of adverse reactions
in their countries.


(By the way, I am also highlighting the petition on the CDC's empirical
definition http://CFSdefinitionpetition.notlong.com i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/ . It's
at 1433 signatures now - it'd be "nice" to have over 1500
when I send it in in 24 hours but that may not happen).


If time allows, I may also do a very quick submission to the UK's APPG
Review pointing out the need for a system where ME/CFS patients can report
adverse reactions to treatments - if I do this, I'll include the data from
surveys to show the need for such a system.


Thanks,


Tom Kindlon
===============================================================
Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
===============================================================

Extract from my draft submission on CDC's Draft 5-year Strategic Plan

Anyway, to move to some numerical data, here are the results of some
numerical data from surveys of patients.

=======================
Survey 1: (UK) Action for ME (2001)

In the UK, the Chief Medical Officer (CMO) (i.e. a government job somewhat
similar to the position of Surgeon General in the US) set up in 1999 a
working group to report on the area of "CFS/ME".

Amongst other things, when they reported in 2002, the report included the
following data from a survey.


Therapy* Respondents Helpful No change Made worse
Drug medication for pain 1394 61% 28% 11%
Drug medication for sleep 1300 67% 17% 16%
Pacing your activities 2180 89% 9% 1%
Graded exercise 1214 34% 15% 50%
Diet changes 1864 65% 32% 3%
Nutritional supplements 1953 61% 36% 3%
Rest, including bed rest 2162 91% 8% 1%
Cognitive Behavioural Therapy 285 7% 67% 26%
Other 878 76% 11% 14%

*Not all the respondents experienced each treatment approach
(Action for ME Membership Survey, 2001. 2338 respondents in total)


This data was then included in the Full NICE Guidance on CFS/ME (Page 95 of
317):

Helpful No change Made worse
Drug medication for pain 61% 28% 11%
Drug medication for sleep 67% 17% 16%
Pacing your activities 89% 9% 2%
Graded exercise 34% 16% 50%
Diet changes 65% 32% 3%
Nutritional supplements 62% 36% 3%
Rest, including bed-rest 91% 8% 1%
Cognitive behavioural therapy 7% 67% 26%
Other 75% 11% 14%
[Aside: there are three changes by 1% from the figures given in the CMO
Report - these are on "occasions" when the first numbers did not add to 100%
but with the changes, the numbers all added to 100%. Somebody presumably
thought they need to be changed. Due to rounding, the numbers do not need to
add to 100% to be accurate, so I believe the first set of figures should be
considered the most accurate data]

As one can see, Graded Exercise Therapy had a terrible safety profile in this data – 50% of 1214 people reported being made worse – that's the equivalent of 607 reports of adverse reactions! CBT had the second worst
safety profile with 26% reporting being made worse by it. But this was for
a smaller number of patients (285) than GET, so is equivalent to 74 reports
of adverse reactions.

Pacing and rest (including bed rest) had both the highest rates of people reporting they were helpful (89% and 91%) and also the lowest rates of
adverse reactions – just 1% for each (note: as I say, the first set of data
appears to be the most accurate one with the second data having being
adjusted to add to 100%).

=================
Survey 2: (UK) ME Association (2009)

The UK's ME Association recently organised possibly the largest ever survey
of people with ME/CFS. In its Spring 2009 magazine, it included data on 25
therapies. Yet again, Graded Exercise Therapy (GET) had the highest rates of adverse reactions with a whopping 56.5% of people reporting being made worse by the intervention:

Graded Exercise Therapy
906 replies:
Made much worse: 33.1%
Slightly worse: 23.4%
No change: 21.4%
Improved: 18.7%
Greatly improved: 3.4%

The related treatment modality of physiotherapy (i.e. therapy provided by a physical therapist) also had a high rate of adverse reactions (32.8% in total):

Physiotherapy
862 replies:
Made much worse: 15.7%
Slightly worse: 17.1%
No change: 36.7%
Improved: 27.0%
Greatly improved: 3.5%

Cognitive Behaviour Therapy (CBT) had a lower but still significant rate of adverse reactions 19.5% or 194 out of 997 cases:

Cognitive Behaviour Therapy (CBT)
Made much worse: 7.9%
Slightly worse: 11.6%
No change: 54.6%
Improved: 27.0%
Greatly improved: 3.4%

CBT also came very low (21st of 25) on the table of treatments based on the
percentage of people helped by them. The only treatments below them were
Imunovir (which had only being tried by 62 patients, the lowest number of
the 25 treatments) (25.8% reporting it helped them), NADH and Graded
Exercise Therapy.

The treatment with the highest percentage of people saying it helped was
pacing of activities:

Pacing
2137 replies
Made much worse: 1.2%
Slightly worse: 3.5%
No change: 24.1%
Improved: 59.6%
Greatly improved: 11.6%

Pacing also had one of the lowest rates of people saying they were made
worse by the treatment.

=============================
Survey 3: (UK) 25% ME Group (2004)

In the UK, there is an ME charity specifically for severely affected
patients with ME, called the 25% ME Group.

It conducted a survey of its members which got a response rate of 66% or 437
replies.

This is a direct quote from their report where they quote the statistics
i.e. out of 170 patients who had tried Graded Exercise Therapy (GET), 139
had been made worse by it!

"By far the most unhelpful form of treatment was considered to be Graded
Exercise Therapy (GET). This is a finding that may surprise some readers,
given the current medical popularity of this approach. However, these
patients' perceptions are supported by data from previous experience: of
the 39% of our members who had actually used Graded Exercise Therapy, a
shocking 82% reported that their condition was made worse
by this treatment. On the basis of our members' experiences we question whether GET is an
appropriate approach for patients with ME. It is worth noting that some
patients were not severely affected before trying GET. Thus, it is not only
people with severe ME who may be adversely affected by this form of
treatment."

=============
Survey 4: "Scotland M.E./CFS Scoping Exercise Report" (October 2007)

With Section 16b Funding through The Scottish Government, Action for ME
produced a report: "Scotland M.E./CFS Scoping Exercise Report" (October
2007)


"In total 564 people with M.E. were sent a questionnaire (510 sent hard
copies, 54 electronic versions). 399 completed questionnaires were received
which represents a 71% return." (Page 8)


Table (Page 9)

Treatment
Helpful no effect made me worse didn't try
CBT 15.5% 17.5% 7% 60%
GET 5% 6% 32% 57%
Graded Activity 18% 8% 30% 44%
Pacing 77% 8.5% 3.5% 11%

----------------------------------------------------

Translating these percentages into percentages solely based on people who
had actually tried a treatment (more interesting figures, I think most
people would agree), would give the following figures (the actual figures
may have been a tiny bit different because of rounding):

---
CBT
---

Numbers Tried: 160

Helpful: 38.75% (=15.5/40) (62)
No effect: 43.75% (=17.5/40) (70)
Made me worse: 17.5% (=7/40) (28)

----------------------------------
GET (i.e. Graded Exercise Therapy)
----------------------------------

Numbers Tried: 172

Helpful: 11.63% (=5/43) (20)
No effect: 13.95% (=6/43) (24)
Made me worse: 74.42% (=32/43) (128)

---------------
Graded Activity
---------------

Numbers Tried: 224

Helpful: 32.14% (=18/56) (72)
No effect: 14.29% (=8/56) (32)
Made me worse: 53.57% (=30/56) (120)

------
Pacing
------

Numbers Tried: 298

Helpful: 86.52% (=77/89) (258)
No effect: 9.55% (=8.5/89) (28)
Made me worse: 3.93% (=3.5/89) (12)


The odd proponent of GET has tried to say that figures from surveys are
somehow not significant because we don't know whether the people did Graded
Exercise Therapy under a professional or not. Firstly surveys 5 and 6
(below) show that the evidence isn't there to show that doing these
treatments under a specialist is safer. Also the fact remains that GET is
like an "over-the-counter" drug. People will try it if information is put
out that it is an effective treatment either under a professional or by
themselves. Which means promoting it as a treatment for ME/CFS risks
damaging people's health.

======================
Survey 5: (UK) Action for ME (2003)

Action for ME in 2003 wanted to follow up on its previous survey to see
whether changes were occurring with regards to members' experiences of
treatments. It restricted responses to treatments received over the
previous three years so that the results would not overlap with a previous
survey. 550 patients were sent a questionnaire, "your experiences", with
354 people responding (a response rate of 64%).

List of results for people who did GET broken down by the practitioner:

Under a physio:
Negative 12 (67%)
Neutral 0 (0%) Positive 6 (33%)

Under an Ot:
Negative 6 (100%)
Neutral 0 (0%) Positive 0 (0%)

Under a Doctor:
Negative 3 (27%) Neutral 1 (9%) Positive 7 (64%)

Under a Behavioural Therapist:
Negative 1 (25%) Neutral 1 (25%) Positive 2 (50%)

Gym:
Negative 3 (100%)
Neutral 0 (0%) Positive 0 (0%)

No Professional:
Negative 1 (8.33%) Neutral 4 (33%) Positive 7 (58%)
With regard to this group the authors of the report say:
"Had NO professional input (had they therefore paced themselves ?) -
mostly with positive outcomes"

If one combines
Under a physio + Under an OT + Under a doctor + Under a behavioural
therapist, to get a figure for under a professional:
Negative 22 (56.41%) Neutral 2 (5.13%) Positive 15 (38.46%)

So those who did GET under a professional had much higher rates of adverse
reactions.

=================
Survey 6: (UK) Action for ME/Association for Youth with ME (2008):

This is another large survey, with 2763 patients with ME or CFS in the UK
responding to a questionnaire which asked about people's experiences of
treatments over the last three years (to avoid overlap with other surveys
Action for ME had undertaken).

It found that of 699 who said they'd tried Graded Exercise Therapy, 34% said
they'd been made worse
by it compared to 45% who said they'd been helped and
21% who said it made no difference.

The contention that people would not have being made worse by a treatment if
they had done the treatment under specialist supervision, is not backed up
by the data from this study. Patients were asked who provided the GET
treatment. Of the 567 who answered this question, 181 (31.92%) said it had
made them worse compared to 276 (48.68%) who said it helped and 110 (19.40%)
who said it made no difference; these are very similar percentages to the
subgroup of 335 patients who had done the management strategy under an "NHS
specialist": 111 (31.27%) of this group said they'd been made worse compared
to 162 (45.63%) who said they'd been helped and 82 (23.10%) who said it made
no difference.


So a large proportion of patients in the UK have experienced adverse
reactions for trying Cognitive Behaviour Therapy (CBT) and in particularly
Graded Exercise Therapy (GET).
However it is my experience from reading
Peter White's writings and hearing him talk that he does not inform people
of this information.

Given the seriousness of the issue, I feel it would irresponsible if the CDC
allows Peter White to be the only representative from the UK.

Suggestions for others on the ground who are not in denial of the issue of
adverse reactions from GET (like Peter White appears to be) include: Charles
Shepherd MD charles.c.shepherd@btinternet.com ; Ellen Goudsmit PhD
CPsychol AFBPsS (a Chartered Health Psychologist) ellengoudsmit@HOTMAIL.COM
; Abhijit Chaudhuri DM MD PhD FACP FRCP (a consultant neurologist)
chaudhuria@gmail.com and William Weir MD (an infectious disease consultant
who ran an NHS clinic for ME for a number of years – I don't have an E-mail
address at the time of writing but he can be contacted through his practice
at: +44-207-467-8478 (i.e. from the US: 00-44-207-467-8478). All of these
four professionals have published in the area and been in the area for over
10 years – I think Dr William Weir is in the area for approximately 20 years
and Drs Shepherd and Goudsmit for over 20 years. Drs Chaudhuri and Goudsmit
did their PhDs in the area.



Surveys from other countries:

The 6 above surveys are from the UK. I have information on some surveys
undertaken by local groups in the UK which would also report high rates of
adverse reactions both from CBT and especially GET.

However reports of adverse reactions are not restricted to the UK.

Gijs Bleijenberg PhD is a Dutch psychologist which the CDC has worked with.
I fear he will not have shared with the CDC or others results of surveys of
patients which show a somewhat different picture to the studies he has
published.

==================
Survey 7:
Koolhaas et al (2008/2009)

*Majority of ME/CFS patients negatively affected by Cognitive Behaviour
Therapy***
(From:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0803A&L=CO-CURE&P=R647&I=-3 )

To the best knowledge, this was presented at the 2009 IACFS/ME conference by
Dr Van Hoof.

The following summary is from page 4 of the Dutch-language study.


http://home.planet.nl/~koolh222/cgtbijmecvsvanuitperspectiefpatient2008.pdf

Cognitieve gedragstherapie bij het chronische vermoeidheidssyndroom (ME/CVS)
vanuit het perspectief van de patiënt

Drs. M.P. Koolhaas, H. de Boorder, prof. dr. E. van Hoof
Date: February 2008
ISBN: 978-90-812658-1-2

The Netherlands



*SUMMARY*


*Background

*In recent years, Chronic Fatigue Syndrome, also known as Myalgic
Encephalomyelitis
(ME/CFS), has been getting a lot of attention in scientific literature.
However its aetiology
remains unclear and it has yet to be clarified why some people are more
prone to this
condition than others. Furthermore, there is as yet no consensus about the
treatment of
ME/CFS. The different treatments can be subdivided into two groups, the
pharmacological
and the psychosocial therapies. Most of the scientific articles on treatment
emphasize the
psychosocial approach.


The most intensively studied psychological therapeutic intervention for
ME/CFS is cognitive
behaviour therapy (CBT). In recent years several publications on this
subject have been
published. These studies report that this intervention can lead to
significant improvements in
30% to 70% of patients, though rarely include details of adverse effects.
This pilot study was
undertaken to find out whether patients' experiences with this therapy
confirm the stated
percentages. Furthermore, we examined whether this therapy does influence
the
employment rates, and could possibly increase the number of patients
receiving educational
training, engaged in sports, maintaining social contacts and doing household
tasks.


*Method

*By means of a questionnaire posted at various newsgroups on the internet,
the reported
subjective experiences of 100 respondents who underwent this therapy were
collected.
These experiences were subsequently analysed.

*Results

*Only 2% of respondents reported that they considered themselves to be
completely cured upon finishing the therapy
. Thirty per cent reported 'an
improvement' as a result of the therapy and the same percentage reported no
change. Thirty-eight percent said the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Participating in CBT proved to have little impact on the number of hours people were capable of maintaining social contacts or doing household tasks. A striking outcome is that the number of those respondents who were in paid employment or who were studying while taking part in CBT was adversely affected. The negative outcome in paid employment was statistically significant. CBT did, however, lead to an
increase in the number of patients taking up sports.


A subgroup analysis showed that those patients who were involved in legal
proceedings in order to obtain disability benefit while participating in CBT
did not score worse than those who were not. Cases where a stated objective
of the therapy was a complete cure, did not have a better outcome. Moreover,
the length of the therapy did not affect the results.


*Conclusions

*This pilot study, based on subjective experiences of ME/CFS sufferers, does
not confirm the high success rates regularly claimed by research into the
effectiveness of CBT for ME/CFS. Over all, CBT for ME/CFS does not improve
patients' well-being: more patients report deterioration of their condition
rather than improvement.
Our conclusion is that the claims in scientific
publications about the effectiveness of this therapy based on trials in
strictly controlled settings within universities, has been overstated and
are therefore misleading. The findings of a subgroup analysis also
contradict reported findings from research in strictly regulated settings.

==============
Survey 8: Survey of 3 Dutch ME/CFS patient organizations (December 2008):

3 Dutch ME/CFS patient organisations published in December 2008 at:
http://www.nivel.nl/pdf/Rapport-draagvlakmeting-CVS-ME-2008.pdf the results
of a large survey they undertook. Following the link, one can see the
questionnaire that was used.

Table 2.1 numbers of sent questionnaires and responses returned to the
patients' associations

Number sent: 740

Total number of responses: 449
% response rate (gross): 60.7%
Number of filled in questionnaires: 412
% Net response rate: 55.7%
~~~~~~~~~~
(Rough) Translation into English of the results tables from a large survey
of the membership of three Dutch ME/CFS patient organisations (part 2 of 2)
Table 4.10 Treatment or accompaniment/support/management concerning the
diagnosis ME/CFS and the impact experienced of that treatment or
accompaniment/support

Treatment or accompaniment/support/management

Column 1: % that has had (the) treatment
Column 2: Number of those that have answered
Column 3: Impact: After (i.e. because of) the treatment, improved
Column 4: No impact
Column 5: Impact: After (i.e. because of) the treatment, disimproved

- Diet 65,2% n=251 50,2% 43,8% 6,0%

- Homoeopathy 64,6% n=247 30,8% 62,8% 6,5%

- Physiotherapy 52,4% n=203 36,9% 41,9% 21,2%

- Vitamin B12 48,2% n=184 32,1% 63,0% 4,9%

- Psychotherapy (not CBT), Psychological support 46,1% n=169 33,1%
60,9% 5,9%

- Management based on trying to have a balance of rest and activity 44,2%
n=172 57,0% 33,7% 9,3%

- Antidepressants 43,0% n=165 32,7% 36,4% 30,9%

- Carnitine 40,9% n=156 37,2% 53,8% 9,0%

- Melatonin 38,0% n=146 32,9% 50,7% 16,4%

- Graded Activity/Exercise Therapy 37,3% n=142 43,0% 23,9% 33,1%

- Painkillers 37,0% n=138 47,1% 47,8% 5,1%

- Cognitive Behavioural Therapy (CBT) 29,9% n=115 30,4% 42,6% 27,0%

- oefentherapie (I think this is a cross between physiotherapy and the
Alexander Technique) 27,0% n=102 20,6% 42,2% 37,3%

- Herbal Medicine 26,7% n=97 28,9% 61,9% 9,3%

- Bed-rest 11,7% n=45 48,9% 44,4% 6,7%

- Participation at a rehabilitation centre 10,2% n=40 45,0% 35,0% 20,0%

- Immunological therapy 7,7% n=25 44,0% 40,0% 16,0%

- Neurofeedback 3,8% n=14 35,7% 57,1% 7,1%

~~~~~~~~~~

Tabel 4.10 Behandeling of begeleiding in verband met de diagnose ME/CVS en
het ervaren effect van die behandeling of begeleiding

Behandeling of begeleiding % dat

Column 1: % dat behandeling heeft gehad
Column 2: aantal dat vraag naar effect heeft beantwoord
Column 3: Effect: Het ging daarna beter
Column 4: Geen effect
Column 5: Effect: Het ging daarna slechter

- dieet 65,2% n=251 50,2% 43,8% 6,0%

- homeopathie 64,6% n=247 30,8% 62,8% 6,5%

- fysiotherapie 52,4% n=203 36,9% 41,9% 21,2%

- vitamine B12 48,2% n=184 32,1% 63,0% 4,9%

- psychotherapie (niet CGT), psychologische begeleiding 46,1% n=169 33,1%
60,9% 5,9%

- begeleid zoeken naar een balans van activiteiten en rust 44,2% n=172 57,0%
33,7% 9,3%

- antidepressiva 43,0% n=165 32,7% 36,4% 30,9%

- carnitine 40,9% n=156 37,2% 53,8% 9,0%

- melatonine 38,0% n=146 32,9% 50,7% 16,4%

- begeleide opbouw van activiteiten 37,3% n=142 43,0% 23,9% 33,1%

- pijnstillers 37,0% n=138 47,1% 47,8% 5,1%

- cognitieve gedragstherapie (CGT) 29,9% n=115 30,4% 42,6% 27,0%

- oefentherapie 27,0% n=102 20,6% 42,2% 37,3%

- kruidentherapie 26,7% n=97 28,9% 61,9% 9,3%

- bedrust met begeleiding 11,7% n=45 48,9% 44,4% 6,7%

- opname in revalidatiecentrum 10,2% n=40 45,0% 35,0% 20,0%

- immunologische therapie 7,7% n=25 44,0% 40,0% 16,0%

- neurofeedback 3,8% n=14 35,7% 57,1% 7,1%


Survey 9: Norway (2009)

[Patients' experience with treatment of chronic fatigue syndrome.]
Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6
[Article in Norwegian]

*Bjørkum T*
*Wang CE*,
*Waterloo K*.

torunn.bjoerkum@helse-forde.no Sogndal BUP Postboks 184 6851 Sogndal.
http://www.ncbi.nlm.nih.gov/pubmed/19521443


BACKGROUND: Chronic fatigue syndrome is a highly debated condition. Little
is known about causes and treatment. Patients" experience is important in
this context.

MATERIAL AND METHODS: 828 persons with chronic fatigue syndrome
(ICD-10 code: G93.3) were included in the study. They were recruited through
two Norwegian patient organizations (ME-association and MENiN). The
participants filled in a questionnaire on their experience with various
approaches to alleviate their condition.

RESULTS: Pacing was evaluated as useful by 96% of the participants, rest by 97%, and 96% of the participants considered complete shielding and quietness to be useful. 57% of the participants who had received help to identify and
challenge negative thought patterns regarded this useful. 79% of the participants with experience from graded training regarded this to worsen their health status.
Overall, the results were similar, irrelevant of the severity of the
condition.

INTERPRETATION:Most participants in this study evaluated pacing, rest and
complete shielding and quietness to be useful. The experience of the
participants indicate that cognitive behaviour therapy can be useful for
some patients, but that graded training may cause deterioration of the
condition in many patients. The results must, however, be interpreted with
care, as the participants are not a representative sample, and we do not
know the specific content of the approaches.

Survey 10: (US) The CFIDS Association of America 1999 Reader Survey:

The largest survey of ME/CFS patients that I am aware of in the US was
published by the the CFIDS Association of America in 1999 (questionnaires
were also distributed that year).

I can send a copy of the page of results of 28 therapies on request.
Unfortunately, I do not have time to type in all the results at present.

820 readers filled in the questionnaire.

The results for Graded Exercise Therapy were:
462 respondents
Helped a lot: 111 (24.0%)
Helped a little: 170 (36.8%)
No effect: 51 (11.0%)
Harmful: 130 (28.1%).

Numerically this was the highest rate of adverse reactions. Numerically the
second highest rate of adverse reactions was reported for antidepressants:

Antidepressants
539 respondents
Helped a lot: 163 (30.2%)
Helped a little: 154 (28.6%)
No effect: 104 (19.3%)
Harmful: 118 (21.9%).

In terms of percentages, Graded Exercise Therapy had the third highest rate
of adverse reactions.
Two treatments, Beta-blockers and colonics, which I
think the CDC is unlikely to recommend, were marginally higher:

Beta-blockers
172 respondents
Helped a lot: 33 (19.1%)
Helped a little: 39 (22.7%)
No effect: 45 (26.2%)
Harmful: 55 (32.0%).

Colonics
131 respondents
Helped a lot: 14 (10.7%)
Helped a little: 38 (29.0%)
No effect: 42 (32.1%)
Harmful: 37 (28.2%).

CBT had a lower rate of adverse reactions compared to the rates seen in
other surveys. This may be because CBT in the US is not currently simply based on
GET – there are different forms offered some which might encourage the
pacing of activities. However this might change if information from the
form of CBT that tends to be used in the UK and the Netherlands is
highlighted by the CDC.

CBT
160 respondents
Helped a lot: 48 (30.0%)
Helped a little: 60 (37.5%)
No effect: 38 (23.8%)
Harmful: 16 (10.0%).

The treatment with the best results was Pacing of activities. It had the
lowest rate of adverse reactions (1/601 or 0.2%) and the highest helpful
percentage (i.e. the sum of the percentages for helped a little and helped a
lot)

Pacing
601 respondents
Helped a lot: 423 (70.4%)
Helped a little: 167 (27.8%)
No effect: 20 (3.3%)
Harmful: 1 (0.2%).