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Parliamentary group slams NHS and Deptment for Work & Pensions re people with ME/CFS


Parliamentary group slams NHS and Dept for Work & Pensions re people with ME/CFS

Parliamentary group slams NHS and Department for Work and Pensions care for people with ME/CFS
Thursday, 11 March 2010 18:42

Failures by the NHS in many parts of the country to deliver adequate services to children and adults with ME/CFS, lack of training for doctors and poor performance by the Department of Work and Pensions and its contractor for medical assessments have been slammed by a Parliamentary group this week.

The All Party Parliamentary Group on ME at their meeting on Wednesday (10 March 2010) unveiled its final report on the state of NHS services in England for people with the illness.

Immediately afterwards, group chairman Dr Des Turner MP commented:

Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS.

"We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients, especially children and the most severely affected.

"We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients ability to undertake regular work.

The report was prepared by MPs Des Turner, Tony Wright, Andrew Stunell, Peter Luff and the Countess of Mar.

It set out to evaluate the extent to which the NHS is providing care for people with ME particularly in primary and secondary care, and in specialist centres and multi-disciplinary teams.

It sets out 11 recommendations to address the inequalities faced by people with ME.

The final report can be read here


Thanks Island, very informative. I especially like recommendation #8.

welcome Lelvina- #8 is GREAT, as are most of them. #3 is quite a declaration of failure of the Chief Medical Officer (CMO) of 2002.

In fact, I think I'll post them. Do you know if this group has any power? Will anything happen? Will there be any follow-up & accountability? It seems almost too good to be true!

All-Party Parliamentary Group on ME
Inquiry into NHS Service Provision for ME/CFS

Recommendation 1
There were a significant number of submissions from PCTs stating that they do not
have accurate patient numbers. PCTs who do offer adequate services could only
supply numbers of how many people are using their particular service. There will also
be an unknown number of other sufferers within the community.

The Department of Health should undertake research to accurately determine
the numbers of patients with ME/CFS.

Recommendation 2
It is clear from the evidence that there are probably sufficient numbers of patients
involved and sufficient uncertainties about the nature and availability of services to
justify a measure in addition to the NICE Guidelines.

A national service framework should be created to complement the NICE

Recommendation 3
The APPG felt that many of the concerns and experiences submitted as evidence by
patients, carers and patient organisations would have been addressed had the
Independent Working Group Report to the Chief Medical Officer (CMO) of 2002 had
been acted upon adequately.

The DoH should revisit the report to the CMO and ensure that the
recommendations relating to service provision are adequately addressed and
are implemented promptly.

Recommendation 4
Currently, there appears to be a lack in consistency in treatment options offered to
patients in different PCTs. The Group has ascertained this from the evidence supplied
by PCTs and patients. The APPG finds the degree of variation in the availability and
access to services unacceptable. Patient evidence also indicates people want
services that are physician led, multidisciplinary, and are situated in locations that are
easily accessible to those with significant mobility problems.

The APPG recommend the DoH take steps to remedy the variation and ensure
that each PCT offers a full range of services promptly a process that should
involve meaningful consultation with local patients or patient support groups.

Recommendation 5
Through the evidence supplied to the Group, it is clear that there is a significant lack
of services available for children and adolescents. Many services only offer treatment
options to patients over 16, which has led to many children not receiving adequate
care. This is unacceptable and can lead to tragic consequences.

The APPG therefore call on PCTs, Strategic Health Authorities and the DoH to
undertake a detailed review of current services for children and adolescents to
ensure that all receive adequate care and that all decisions are made in
conjunction with personal carers, education authorities and social services
where appropriate.

Recommendation 6
From correspondence with the Royal College of Physicians and the Royal College of
General Practitioners, the Group is not convinced that medical students receive
sufficient training on ME/CFS, including how to clinically assess and diagnose these
patients and advise on appropriate forms of management.

The Group recognises that ME/CFS does not have the same obvious impact as
cardiovascular disease or cancer, but that it is necessary for medical students
to receive adequate training in ME/CFS. The relevant Royal Colleges should
ensure that students receive training in this disease.

Recommendation 7
There were a large number of submissions from patients that stated their experience
with GPs was poor due to lack of awareness of the disease amongst primary care

GPs should receive ME/CFS awareness training as part of their continuing
professional development and ensure they are able to adequately recognise the
symptoms of ME/CFS and deliver a correct diagnosis. They should also be
aware of the various management pathways.

Recommendation 8
The Group noted evidence that there were serious concerns about acceptability,
efficacy and safety with some treatments such as cognitive behaviour 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.

Recommendation 9
To date research in the field of ME/CFS has produced little substantive progress but
there are a number of encouraging findings e.g. the XMRV research, which need to be
pursued. As noted in the Gibson report, there has also been far too much emphasis in
the past on psychological research and insufficient attention to biomedical research.
The Group welcomes the recent MRC initiative to attract new researchers and new
technologies in to this area.

However, the Group is sure that it is vital that further biomedical research is
undertaken to help discover a cause and more effective forms of management
for this disease.

Recommendation 10
It is clear from the evidence submitted to the Group that currently, ME/CFS patients
receive little assistance in the complicated process of application for benefits and that
refusal rates are worryingly high. Applying for benefits is an extremely prolonged and
strenuous task, especially if patients are forced to appeal the original decision where
their application was denied.

The Department of Work and Pensions should review its guidance to decision
makers to increase the awareness of the specific difficulties faced by ME/CFS
sufferers. Furthermore the Group recommends that ATOS Healthcare staff
should also receive increased training to ensure that they are fully aware of ME/
CFS and the limitations that it places on patients

Recommendation 11
The APPG is aware that many patients who are severely affected by this disease are
receiving either inadequate care or no NHS care at all, which is clearly inconsistent
with the NICE Guidelines.

Specialist referral services must ensure that high priority is given to the needs of
the severely affected, especially in relation to domiciliary services and in-patient
facilities for assessment and management.
welcome Lelvina- #8 is GREAT, as are most of them. #3 is quite a declaration of failure of the Chief Medical Officer (CMO) of 2002.

In fact, I think I'll post them. Do you know if this group has any power? Will anything happen? Will there be any follow-up & accountability? It seems almost too good to be true!

Thanks Islandfinn! Those are all the questions I hoped someone would answer! Does this group have power? I don't know. Thanks for posting them all!


Senior Member
No the group has no power at all.

The UK is due for a General Election sometime this year.

The APPG on ME will be disolved at that time (as all APPG's are) and then after the election we may be able to start it up again.

Dr Des Turner is standing down at this election so unless he goes to the House of Lords sometime, his involvement with this group ends.


Senior Member
No the group has no power at all.

The UK is due for a General Election sometime this year.

The APPG on ME will be disolved at that time (as all APPG's are) and then after the election we may be able to start it up again.

Dr Des Turner is standing down at this election so unless he goes to the House of Lords sometime, his involvement with this group ends.

All our worries are over, they're looking at the Ligtning Process.

Hiopefully it will strike the right people, then we can get some people in place who can listen, understand, think and act wisely.


Senior Member
England (south coast)
This is interesting, from the APPG document, page 8:

These surveys suggest that pacing is arguably the best current form of therapy as, when successful, it allows patients to, in at least some aspects, be able to manage their lives. This fits with the written responses that the APPG received and many patients recognised pacing as an effective method to enable them to exert an element of control in their lives.

The APPG also found that much of the evidence suggested that CBT and GET were viewed with concern. Much anecdotal evidence suggested that in a number of situations, both treatments have made patients’ conditions worse. This result seems to fit with the results of the independent patient surveys which both noted a disturbingly high number of patients who found the treatments unhelpful and sometimes even counter-productive.

While the APPG recognises that it is impossible for all treatments in any disease area to be side-effect free, if CBT and GET were licensed medication, this number of patients claiming devastating side effects would undoubtedly have led to a review by NICE. The same standards should apply to CBT and GET.

However, it was noted in the oral evidence sessions, that concerns around CBT and GET may be due to the competence of the practitioner and not the treatments themselves. This was the assertion from Dr Esther Crawley, who is a consultant paediatrician and the clinical lead at the Bath ME/CFS Service. In Dr Crawley’s oral evidence, she stated that evidence suggests long term strategies of CBT were successful and that it is dangerous to only accept patient evidence and not detailed scientific studies.

It was suggested by Dr Crawley and in a number of patient and carer surveys that some failures in the CBT treatment could be caused by practitioners who are without the proper training in ME/CFS. She stated it was vital that all treatments, including CBT, GET, pacing etc. should be offered by specialists who have received specialist training with ME/CFS patients. The issue of training will be dealt with in greater detail further on in the report.

The Group heard evidence regarding the Lightning Process during the oral evidence sessions. This treatment, as far as the APPG is aware, is still only considered to be complementary. While the APPG has received both written and oral evidence that the Lightning Process can be very effective, it is also very expensive. According to the organisation that offers the programme’s website, it costs 560 for the three day session11 and none of this cost can be claimed on the NHS. The APPG would also point out that, like many CFS/ ME treatments, it is not suitable or effective for all patients but the Group suggest that further investigation of its efficacy might be undertaken. It is important to note that the Group has received anecdotal evidence of people who have chosen to spend 560 on this therapy but have gained no benefit at all.

What is clear to the Group is that there is no magic bullet and most of the treatments outlined above only offer patients a way to manage their lives as normally as possible.

None provides a scientifically proven cure.

And, extracted from page 6:

Table 1 Norfolk & Suffolk ME/CFS Service – 2009 Patient Survey p27

Intervention / Helpful % / No change % / Not helpful %

Pacing 77 12 6

Rest 76 17 4

CBT 20 21 40

GET 13 10 58

Extracted from page 6 (I've taken some info out of this chart, and rearranged it slightly):

Table 2 Action for M.E. and AYME joint report “M.E. 2008: What progress” – page 13. 2763 people responded to the survey

Intervention / Helpful % / No change % / Made worse %

GET 45 21 34

CBT 50 38 12

Lightning therapy 53 31 16

Pacing 82 15 3

Rest inc bed rest 86 13 1

And, extracted from page 7 (I've massively simplified this info, and rearranged it, so there might be mistakes in it):

Table 3 Q 15 pp7 2008 MEA survey of 4,217 individuals (3,494 on-line; 723 on paper).
Preliminary survey results were published in the MEA magazine in Spring 2009

Intervention / Improved % / No Change % / Made Worse %

GET 22.1 21.4 56.5

CBT 25.9 54.6 19.6

Councelling (other than CBT) 29.4 60.1 10.5

Physiotherapy 30.5 36.7 32.8

Modafinil/Provigil 37 33.3 29.6

Yoga 39.1 32.9 28.1

Lightning Process 44.5 34.7 20.8

Pacing 71.2 24.1 4.7

(update: please note that i previously had incorrect figures in the last column of the last chart)
(please also note that in the last chart i have added 'greatly improved' and 'improved' together from the orginal chart and place the combined figures under 'Improved')

Note: this forum doesn't appear to do charts very well!


Senior Member

Thanks again, Bob, amazing work.:hug: (don't worry, I'm not gay...oh, shit, is that PC here?)

We all know pacing works, it's what we've become adept at. It's what we've failed at. It's what we beat ourselves up about when we haven't done it.

We don't need Fuk(uda)ing (this is now a standard ME term, thanks Suzy!!!) medics to explain this to us.

I've forgotten what else I was going to say.....but I don't suffer from cognitive problems.

Cheers, Bob


Senior Member
There's a thread on APPG services inquiry submissions

There's a thread on APPG services inquiry submissions:


Here's the executive summary of mine for what it's worth:

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.


Senior Member
Clay, Alabama
fingers, you crack me up.

I read once that the main benefit to evidence based counseling for CFS patients is that it teaches patients how to live within their limitations. How to live with the illness. And the comment I read was, "Patients usually end up learning that on their own without the help of the counselor." The message being that very little in treatment is available.

"We all know pacing works, it's what we've become adept at. It's what we've failed at. It's what we beat ourselves up about when we haven't done it."

I think your comment echos that. Pacing, we learn about it through our experience. But the way you put it is funny.

And this made me laugh also:

"Thanks again, Bob, amazing work. (don't worry, I'm not gay...oh, shit, is that PC here?)"

Well, saying "gay" may be alright, but cussing may not be. LOL