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Post your submissions to APPG Inquiry into NHS Services for people with ME/CFS (UK)


Senior Member
I thought I'd have a specific thread for people to post their submissions to APPG Inquiry into NHS Services for people with ME/CFS (UK), separate from the discussion on the report/Inquiry etc.

They said they got 400 submissions but it's unclear how much information on these will ever be released.


Senior Member
[A version is available in Word which would be easier to read. I also have
a version in Word with line numbers.

Disclaimer: This, like my submission on the CDC draft research strategy
which had to be in on the same day, was written relatively quickly
(mainly over a 24-hour period!) as I was concentrating on issues in Ireland.
It is not meant to be a comprehensive submission on the issues
- it just makes some points which I thought were important to make
and which others might not concentrate on as there was a 3000 word
count limit. Tom]

Executive Summary: This submission makes comments in two areas.

Area 1) (i) systems need to be put in place so that it is easy for both
patients and also professionals to report adverse reactions to
treatments/management strategies being used on ME/CFS patients. I also
believe that (ii) any existing data on adverse reactions should be collated
and put to use. Information in included from 6 UK surveys organised by
various national ME charities that shows the need for such actions as high
rates of adverse reactions were reported for Cognitive Behaviour Therapy (CBT) and in particular Graded Exercise Therapy (GET). It is pointed out that the safety of medical interventions is generally considered a very important
matter. The apparent lack of interest in the area suggests ME/CFS patients
are perhaps being treated in some way as second class citizens.

Area 2: An audit should be to done to calculate the "real" cost of treatments
recommended by NICE for "CFS/ME" e.g. GET and CBT as well as the specialist services. This is important to assist any calculations as to whether they offer value for money and for future comparisons with other treatment
methodologies. Reference is made to the 5 Belgian Rehabilitation (i.e. that
used CBT & GET) centres for CFS and the large cost per patients they incurred [in the region of E10,000 (ST8526) per patient], with disappointing results.


Point 1: I believe: (i) systems need to be put in place so that it is easy for
both patients and also professionals to report adverse reactions to
treatments/management strategies being used on ME/CFS patients. I also
believe that (ii) any existing data on adverse reactions should be collated.

I'm appending below the results of six surveys of patients in the UK which
clearly shows that patients have been having high rates of adverse reactions
to some treatments including non-drug treatments such as Graded Exercise
Therapy (GET) or Cognitive Behavioural Therapy (CBT).

These are the recommended treatments by NICE, put on the level as drugs (in
fact it could be said that they are resulting in people not having access to
other drugs - drugs which can be hard to bring to market as they have to go
through all sorts of testing which can cost millions; it is questionable
whether if CBT or GET was a drug whether it would have got to market now and
been seen by NICE as effective e.g. what objective improvements have been
found in RCTs? What dosages should be used and not used? What are the
contra-indications, special precautions, interactions, etc?).
The safety of treatments and interventions is one of the most important
issues, if not the most important issue, in medicine. The ideas behind the
phrase "First do no harm" are something that are inculcated in medical
students around the world. As Wikipedia says (on the phrase), 'Another way to
state it is that "given an existing problem, it may be better to do nothing
than to do something that risks causing more harm than good."'.

With many interventions such as pharmaceutical drugs, there are mechanisms in
place so that if adverse reactions occur, even after a treatment has been
approved, this information is noted and attempts are made to collate the
information. For example, in the UK, a yellow card scheme where either
prescribing professionals or patients themselves can report adverse reactions.
Drugs can often be taken off the market years after they were first "released"
when it is discovered that they can cause adverse reactions

Unfortunately, with non-pharmaceutical interventions, such options are not
there. I believe that systems should be put in place so that patients and
professionals can report adverse reactions to treatments. Currently, either
the patient is blamed e.g. "they did not do it correctly" or it is seen as the
fault of the individual practitioner ("they did not do it properly"). However
it may be the case, as I believe, that the treatments are not suitable for
some or many of the patients that they are being prescribed for. One method
of doing this would be to extend the yellow card system to non-pharmaceutical
interventions or if that is felt to be too broad, non-pharmaceutical
interventions recommended by NICE.

Given there is no "yellow card" system for adverse reactions to
non-pharmaceutical interventions currently, what data do we have? The
information from patient surveys is the obvious answer. I am appending
information from six surveys from the UK. They clearly show that large rates
of adverse reactions are occurring. Something needs to be done with this

There are plausible scientific reasons why people can be suffering adverse
reactions to treatments which encourage increases in activity: there are
numerous studies that show that the response to exercise in ME/CFS is unusual.
The abnormal response to exercise is not restricted to intense exercise. It
has also been noted in a study which measured the effect of the journey to the
testing centre (White, JoCFS, 2005). An exercise test is like a trial of a
high dose of a drug.

It is important that professionals are told of the abnormal response to
exercise in ME/CFS. I do not see much evidence that professionals are being
told of the abnormal response to exercise in ME/CFS patients.

It is also important that patients are given the risks associated with
treatments. This does not seem to be occurring routinely at the moment. This
means patients can not give informed consent to the treatments they are
trying. Patients trying pharmaceutical agents are given information, so why
not patients with ME/CFS when they are being prescribed treatments? This
suggests that people with ME/CFS are being treated like second class citizens,
not worthy of the protections that are offered to other patients. This needs
to change.

Point 2: An audit should be to done to calculate the "real" cost of treatments
recommended by NICE for "CFS/ME" e.g. GET and CBT as well as the specialist

The calculated figures may not be equivalent to what really happens.

In the future, there will likely be debates about whether pharmaceutical drugs
or non-pharmaceutical interventions are better value for money. However to be
able to do this, one needs to have accurate information on the costs of
non-pharmaceutical interventions. The real world cost may be much higher.

In Belgium, the government has spent 10.2 Euros (UK8.7m) on 5 Rehabilitation
centres using CBT and GET for patients with CFS (Fukuda definition). The
costs were much much dearer than the calculations NICE performed. A Belgian
newspaper ("De Morgen") covered this story in 2008 - here are some extracts
(the original words in Flemish are appended at the end) (see
for full article in Flemish or the full rough translation):
Approximate translation of start of article: "Flanders invests in CFS-therapy
that according to patients and experts does not work. Doctor, I am tired. That
then will be 10,000 Euro".
Approximate translation: "It is not only the Riziv and a couple of tired
patients who find the therapy worthless. It is also said by an independent
watchdog for medical expenditure to the federal centre for health care (KCE).

"The results of the first three years were very disappointing, say Marijke
Eyssen of the KCE. In the areas of quality of life, fitness and the resumption
of work there is too little noticeable improvement. The situation of 35 per
cent of the patients had even deteriorated after the treatment. We had
certainly not expected that all CFS patients be entirely healed after the
therapy. CFS is a complex sickness with unknown origin, where no magic cure
for exists. But we had hoped somewhere for a positive tendency. This report
calls for a scientific re-evaluation of the centres. Should financing be
continued or perhaps another treatment exists?


The "treatments" on offer in the NHS specialist for CFS/ME services are very
manpower intensive. Simply giving the patients written information following
diagnosis would be much much cheaper. In the current situation, that might
free up the budget for more time with medical doctors, more availability of
testing and greater use of symptomatic medication that generally can only be
prescribed by doctors.

Thanking you for your time.

Tom Kindlon

Appendix 1: Surveys showing the high rate of adverse reactions reported in UK
ME/CFS patients following using GET and CBT. Two of the surveys give a
breakdown by practitioner - these do not back up the contention that if
somebody does GET with an NHS specialist, that it is safer.

Survey 1: Action for ME (2001)

In the UK, the Chief Medical Officer (CMO) 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)

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

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

Survey 2: 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 also had a high rate of
adverse reactions (32.8% in total):

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

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

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: 25% ME Group (2004)

The 25% ME Group. is an ME charity specifically for severely affected patients
with ME.

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

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)

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):


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)


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%)

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

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

This is another large survey, with 2763 patients with ME or CFS 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

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.

In this study patients were asked who provided the GET treatment. 567 answered
this question (i.e. 132 did not). 181 (31.92%) of these 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.

335 of these 567 patients said they 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 you can see that a similar percentage of people were made worse by GET who
had done it under an NHS Specialist as those who had not, so doing it under an
NHS specialist did not reduce the rate of adverse reactions.

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).


Senior Member
This is such very clear information, I hope they read it and do something.

Thanks Mithriel.
I can't say I was that impressed with how they covered the issue of GET and CBT in the report:

(I have the bit they had in blue in bold - the bits in blue in the report seemed to be the main point for each recommendation)

Recommendation 8

The Group noted evidence that there were serious concerns about acceptability,
efficacy and safety with some treatments such as cognitive behavior therapy (CBT)
and graded exercise therapy (GET). This may be due to the lack of training given to
professionals but evidence was given that it was in part due to fixed attitudes about
causation by some health professionals. The Group feel that it is inadequate for
professionals to treat patients with ME/CFS when they have not been fully trained in
the particular characteristic of this disease.

It is essential that all healthcare professionals i.e. dieticians, nurses,
occupational therapists, physiotherapists and psychologists, involved in
treatment should have adequate training in ME/CFS and the relevant
professional bodies should ensure this occurs as a matter of real urgency.

NICE should carry out a detailed review of their management guidance on ME/
CFS, in particular the mounting evidence for the need to broaden the range of
appropriate therapies beyond CBT and GET, and to specify that all such
therapies should be delivered by specifically ME/CFS trained professionals.