25% ME Group & the APPG Inquiry

[Guest guest]

From Suzy Chapman

The 25% ME Group has confirmed that the

committee submitted a response to the

Draft Terms of Reference, dated 14

November.

They are also calling for an extension.

Today, I have written again to the APPG Secretariat,

CCd to Dr Des (Chair APPG); Dr Ian Gibson

(Secretary to APPG); Countess of Mar, for its

position.

I have said that ten days notice in which to submit

comments on this document failed to make proper

allowance for the needs of a disability group for

adequate time in which to scrutinise this document

and submit responses.

I have asked the Secretariat " Does the APPG plan to

respond to the calls it is known to be receiving,

reconsider and announce an extension? "

Don't let the deadline discourage you from

submitting your comments to the APPG secretariat -

get a response in, anyway.

The draft Terms of Reference can be read here:

http://tinyurl.com/5ysbox

Contact details for the APPG Secretariat here:

http://meagenda.wordpress.com/2008/11/05/appg-secretariat/

and you can read the 25% ME Group's response,

below.

``````````````````````

The document below is available at the foot

of the " What's New " section of the 25% ME

Group's website here:

http://www.25megroup.org/What's%20New.htm

or download the document here:

http://www.25megroup.org/Campaigning/Awareness%202008/APPG%20Terms%20of%20Refere\

nce.doc#appgservices

25% ME Group Response to the draft

Terms of Reference for the APPG Inquiry

on NHS Service Provision For People with

ME

14th November 2008

The 25% ME Group believe there should be a delay

to this process to facilitate wider consultation

amongst the ME community. We feel that :-

* There has not been proper scrutiny of the Terms of

Reference to this Inquiry.

* More time should be allowed for this process to

take place in a more realistic and generous

timeframe.

* Consultation should be much wider in order to

make sure other ME charities are fully involved in the

process.

* The NICE Judicial Review is an important element

to be considered, and we call for the process of the

APPG Inquiry into NHS Services to be delayed until

the case has been heard.

We would like to ask specifically why the WHO

Classification (ICD G93.3) has not appeared in the

APPG Inquiry Terms of Reference document? This is a

vital point especially as the UK Government and NHS

Policy accept this classification. We should therefore

be emphasising this in the process.

We feel there is gross lack of emphasis on the need

for research in finding biomedical markers and the

emphasis on the requirement for seeking appropriate

treatment, testing and accessibility for ME sufferers,

especially in relation to the severely affected.

As others have pointed out the use of the term

" Encephalopathy " within the Terms of Reference is

not appropriate and is not validated by any WHO

classification, nor is it officially recognised by the

Government or the NHS.

There seems to be an almost afterthought of how

the whole question of the severely affected will " fit

in " within the Terms of Reference rather than

highlighting the seriousness of their condition or

examining ways to provide real services for this

severely ill group of people. The emphasis seems to

relate more to how they can be included and if, and

how, funding will be provided.

We find it very unhelpful for the Secretariat of the

APPG to state that " no wider consultation (of the

draft) was envisaged. " We also find the mention of

the possibility of " minor amendments " to the draft to

be completely inadequate and call for a delay in

drawing up the Terms of the document in order to

enable wider consultation within the ME

community.

We also consider that the process should be delayed

until the Judicial Review of NICE CFS/ME Guidelines

has been completed. It will then be more appropriate

for the APPG Inquiry into NHS Service Provision to

proceed.

Given the fact that one of the aims of the process is

to identify the lack of biomedical research and

services, treatments and testing appropriate to the

needs of neurological ME sufferers (including the

severely affected) it is very debatable whether the

Terms of Reference will be effective in their present

format, since they do not solely relate to patients

with neurological ME but instead will include service

provision for patients with a range of condition

including chronic fatigue; chronic fatigue syndrome

and neurological ME (again including the severely

affected).

We would specifically like to comment upon the

following contained within page 1 of the draft

document:-

1. First para under 'AIM', p1: We agree the inclusion

of the term 'Encephalopathy' is inappropriate and

ill-advised - this is not listed in ICD-10 or anywhere

else. We should stick to the correct term 'Myalgic

Encephalomyelitis'.

2. Last bullet point, p1: This mentions specifically an

inquiry into what funding SHAs and PCTs would need

to implement the NICE guideline, which implicitly

means the implementation of CBT + GET and

virtually no other treatments or alternative

management regimes, a key issue why the guideline

is being contested in a Judicial Review.

3. First bullet point, p2: This mentions 'Plans for the

establishment of new clinical services where no such

service currently exists', but does not stipulate what

these clinical services should comprise - one can only

presume these implicitly comprise the same CBT +

GET management strategies recommended in the

NICE guideline.

4. Third bullet point under 'It will also consider', p2:

'how well health professionals in primary care, ....

provide information about the range of interventions

and symptom management strategies available' ... -

this would almost exclusively cover only CBT +

GET.

5. Fourth bullet point under 'It will also consider', p2:

this talks about 'appropriate professional training in

the range of interventions and symptom

management strategies available' - we assume this

again relates specifically to the use of CBT/GET.

6. Fifth bullet point under 'It will also consider', p2:

it is mentioned here whether health professionals in

primary care, .... provide adequate information on

the possible causes, nature and course of ME'. - This

is curious, particularly in relation to the 'causes',

which the NICE guideline (the implementation of

which is a key point of investigation in this inquiry)

in one part state specifically are not important and

should not be investigated, and then in another part

it is stated that GPs and clinicians should discuss

them with patients. This is one of many flaws in the

NICE guideline and a point seemingly missed by the

people drawing up the Terms of Reference for this

proposed Inquiry. It definitely needs clarification.

7. First para, p3: This mentions 'domiciliary services

(including specialist assessment)': What exactly is

meant by this? Presumably this would apply

particularly to the severely affected, for whom the

NICE Guideline so generously suggests that help for

these patients should be individually tailored to the

needs and capacities of the individual, maybe by

telephone instructions or by e-mail!

In conclusion we feel the Terms of Reference are

inadequate at present in terms of truly representing

neurological ME and we feel it is imperative that

there is wider consultation at this stage in order

that we do not validate the existing status quo of

NHS services provision for this condition.