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More questions from the Countess of Mar

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-10/HL637/

Written question HL637: The Countess of Mar 10-07-2017


Department of Health

HL637

Her Majesty's Government who were the experts the National Institute for Health and Clinical Excellence consulted in their recent review of Clinical Guideline CG 53 for chronic fatigue syndrome and myalgic encephalomyelitis: diagnosis and management.

http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-11/HL684/

Written question HL684: The Countess of Mar 11-07-2017

Department of Health

HL684

Her Majesty's Government what assessment they have made of the chronic fatigue syndrome myalgic encephalomyelitis (ME/CFS) clinical services which were set up between 2004 and 2006; what proportion of patients accessing services recover from ME/CFS or show signs of improvement; and what assessment they have made of the value for money of these services.

http://www.parliament.uk/business/p...ents/written-question/Lords/2017-07-11/HL685/

Written question HL685: The Countess of Mar 11-07-2017

Department of Health

HL685

Her Majesty's Government whether they have any plans to set up an independent review of ME/CFS services which includes an epidemiological study to establish the true incidence of ME/CFS in the population and the impact of the shortage of doctors trained in this specialism; and, if not, why not.
 

Revel

Senior Member
Messages
641
an independent review of ME/CFS services which includes an epidemiological study to establish the true incidence of ME/CFS in the population

How would this even be possible without a diagnostic test for ME/CFS becoming available that the NHS would be prepared to implement?

I can't imagine the use of GP records would be a reliable source of information, given the fact that anyone who presents with symptoms of being "tired all the time" and has nothing untoward show up in their routine bloodwork currently qualifies for a CFS label.
 

RogerBlack

Senior Member
Messages
902
I can't imagine the use of GP records would be a reliable source of information, given the fact that anyone who presents with symptoms of being "tired all the time" and has nothing untoward show up in their routine bloodwork currently qualifies for a CFS label.

There are actual random sampling techniques used sometimes.
You call people at random.
You then follow up people that pass this random screen.
https://www.ncbi.nlm.nih.gov/pubmed/23631737
Mental illness in metropolitan, urban and rural Georgia populations.

Data came from the Georgia population-based random-digit-dialing study investigating unwellness and chronic fatigue syndrome (CFS) in Georgia populations of three defined geographic areas (metropolitan, urban, and rural). Respondents were screened for symptoms of fatigue, sleep, cognition, and pain at household screening interviews, and a randomly selected sample completed detailed individual phone interviews. Based on the detailed phone interviews, we conducted one-day clinical evaluations of 292 detailed interview participants classified as unwell with a probable CFS (i.e. CFS-like; a functional somatic syndrome), 268 classified as other unwell, and 223 well (matched to CFS-like).

From the related paper: https://www.ncbi.nlm.nih.gov/pubmed/17559660 "We estimated that 2.54% of the Georgia population suffers from CFS, which is 6- to 10-fold higher than previous population-based estimates in other geographic areas. These differences may reflect broader screening criteria and differences in the application of the case definition. However, we cannot exclude the possibility that CFS prevalence may be higher in Georgia than other areas where it has been measured."
 

Revel

Senior Member
Messages
641
There are actual random sampling techniques used sometimes.
You call people at random.

Surely such a technique would only uncover mildly affected CFS patients? Those who are moderately or severely affected most likely would not be answering the phone in the first place.

I am rarely well enough to take a call and usually do so only from people I know, who are aware that my verbal communication skills are limited and that I may cut the conversation short if I run out of words/energy.

It also depends upon which GP I see (once every 'blue moon') as to whether or not they acknowledge that I have ME/CFS at all. :confused:
 

RogerBlack

Senior Member
Messages
902
Surely such a technique would only uncover mildly affected CFS patients? Those who are moderately or severely affected most likely would not be answering the phone in the first place.

I don't disagree.
It is an important additional way to capture people not found in other surveys though
 

NelliePledge

Senior Member
Messages
807
I don't disagree.
It is an important additional way to capture people not found in other surveys though
Im mildly affected and I dont answer my landline these days its always someone trying to con you, sell you a new central heating boiler or a recorded message I think phoning people up is a bit 20th century
 

NelliePledge

Senior Member
Messages
807
I expect they'll claim 'inefficient money' for as many questions as possible.

I know that feeling all too well...
they might get away with it in a PQ but if the Countess can persuade a Select Committee to look into it that would be a different matter
 

Revel

Senior Member
Messages
641
what proportion of patients accessing services recover from ME/CFS or show signs of improvement;

Again, how many of these patients have been misdiagnosed as having ME/CFS because there is no diagnostic test available? How can they recover or improve from an illness that they do not have?

These clinics do not distinguish between 'CFS' and 'chronic fatigue' - "It's all the same thing", as one physiotherapist told me.

Also, only mildly affected ME/CFS patients are able to attend such services.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
The reply to HL684 (sorry about delay - struggling):

Lord O'Shaughnessy

No central assessment has been made of chronic fatigue syndrome/myalgic
encephalomyelitis (CFS/ME) clinical services established between 2004
and 2006. The commissioning of services for people with CFS/ME is a
local matter, and the management of patients within such services is the
responsibility of the commissioners, providers and clinicians
responsible for their care. Clinical commissioning groups have a duty to
exercise their functions effectively, efficiently and economically

Since its publication in 2007, the National Institute for Health and
Care Excellence (NICE) clinical guideline on the management of CFS/ME in
adults and children, which set outs best practice on the care, treatment
and support of people with the condition, has supported the local
National Health Service in delivering services for people with the
condition. The guidance recognises the challenges in managing a
condition for which there is no definitive diagnostic test, no clear
understanding of the causes and process of disease and no cure. The
guidance is also clear that there is no one form of treatment to suit
every patient and that treatment and care should take into account the
personal needs and preferences of the patient. NICE is currently
reviewing the guidance to ensure it reflects the latest available
evidence and a decision regarding this matter is expected shortly.

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(c) 2017 Parliamentary copyright
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
reply to HL685:


Lord O'Shaughnessy

There are no plans to set up an independent review of chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME) services. Services for
patients with CFS/ME are supported by independent, evidence-based
guidance produced by the National Institute for Health and Care
Excellence on the diagnosis, treatment and support of patients with the
condition. Commissioners should deliver services that meet the needs of
local popuations. Assessments of service need for CFS/ME may be
supported by the available population prevalence estimates as required.

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(c) 2017 Parliamentary copyright