Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Enc

[Esther12]

Developing resources to support the diagnosis and
management of Chronic Fatigue Syndrome/Myalgic
Encephalitis (CFS/ME) in primary care. A
qualitative study

Kerin Hannon1*
* Corresponding author
Email: kerin.hannon@manchester.ac.uk
Sarah Peters2
Louise Fisher3
Lisa Riste1
Alison Wearden2
Karina Lovell4
Carolyn Chew-Graham5
Pam Turner, Patient co-investigator
Yvonne Leech, Carer representative
Abstract

Background
NICE guidelines emphasise the need for a confident, early diagnosis of Chronic Fatigue
Syndrome/ Myalgic Encephalitis (CFS/ME) in Primary Care with management tailored to the
needs of the patient. Research suggests that GPs are reluctant to make the diagnosis and
resources for management are currently inadequate. This study aimed to develop resources
for practitioners and patients to support the diagnosis and management of CFS/ME in
primary care.
Methods
Semi structured interviews were conducted with patients, carers, GPs, practice nurses and
CFS/ME specialists in North West England. All interviews were audio recorded, transcribed
and analysed qualitatively using open explorative thematic coding. Two patient involvement
groups were consulted at each stage of the development of resources to ensure that the
resources reflect everyday issues faced by people living with CFS/ME.
Results
Patients and carers stressed the importance of recognising CFS/ME as a legitimate condition,
and the need to be believed by health care professionals. GPs and practice nurses stated that
they do not always have the knowledge or skills to diagnose and manage the condition. They
expressed a preference for an online training package. For patients, information on getting the
most out of a consultation and the role of carers was thought to be important. Patients did not
want to be overloaded with information at diagnosis, and suggested information should be
given in steps. A DVD was suggested, to enable information sharing with carers and family,
and also for those whose symptoms act as a barrier to reading.
Conclusion
Rather than use a top-down approach to the development of training for health care
practitioners and information for patients and carers, we have used data from key
stakeholders to develop a patient DVD, patient leaflets to guide symptom management and a
modular e-learning resource which should equip GPs to diagnose and manage CFS/ME
effectively, meet NICE guidelines and give patients acceptable, evidence-based information.

http://www.biomedcentral.com/content/pdf/1471-2296-13-93.pdf

I hate these sorts of papers. Get a small group of people together, then have the researchers select the quotes they want to present in their paper. It's distressing to me that citing them in support of a point is any more respectable than citing a thread on a forum.

The quotes they give often don't really support their preceding claim anyway, eg:

All patients highlighted the need for the diagnosis to be given by the GP in a positive way to maintain hope that symptoms can improve:

“That was like… it‟s like the sun coming out basically. It was so wonderful
that she could see a consultant and physio and counsellor, everybody really
that she needed to see.” Carer 1 (female, daughter with severe CFS/ME)

The quote from the carer was indicating relief at having access to support, and people who may be able to help, nothing there indicated a need for the diagnosis to be given in a 'positive' way to maintain hope that symptoms can improve.


It's probably worth pointing out that some of the researchers who wrote this paper were also involved with the FINE trial, the results from which showed their psychosocial 'treatment' to be ineffective. As part of the FINE trial a leaflet was given to patients, and it included claims like:

“As medical research and tests have shown, there is no hidden disease: therefore activity can do no harm when performed at a level matching your fitness.”

“On Restarting exercise after a cold or setback it says : Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else."

So these people are perfectly willing to make rather bold assertions to patients. They followed up their FINE paper with a paper which mentioned that their approach to CFS had led to their therapists believing of CFS patients "The bastards don't want to get better". That the patients given their psychosocial pragmatic rehabilitation improved no more than those in the control group
might have led to some soul searching from those responsible, greater acceptance of their own ignorance, or ideally, resignations.

It seems that's not happened.

The practitioner needs to discuss the possibility of CFS/ME in
a positive manner, providing patients both with an explanation for their fatigue and with
options for symptom management.

This is straight out of FINE. The practitioner certainly should not provide patients with an explanation for their fatigue, because if they had an explanation for their fatigue, they would not have CFS. Explanations unsupported by the evidence are just quackery. Patients should not be spoken to in a positive way, or a negative way, but simply as clearly and honestly as is possible.

However, CFS/ME specialists and other GPs did recognise the importance of a positively
framed diagnosis, and the impact this can have on the patient‟s quality of life:

“Actually making a diagnosis can be quite empowering for patients as long as
all of the causes have been excluded, that all red flags have been excluded, et
cetera, and that the clinical history sort of makes sense, the story, listening to
the patient's story, when you've heard it many times it seems fairly obvious
but you actually need to make time to hear it.” CFS/ME specialist 2

So here they are saying that all of the causes should have been excluded before a diagnosis can be helpful... but given the number of things which can cause the symptoms of CFS, has any CFS patient ever had all of the causes excluded? Also, if a diagnosis of CFS is going to lead to patients having to put up with the sort of ineffective misleading 'rehabilitation' we saw under FINE, I don't see that as remotely empowering.

A lot of the medical staff really seemed to have no idea about CFS, and be quite aware of and honest about their own ignorance... I was pretty impressed with them. It's much better than what I expected, as I assumed most of them would be spouting the sort of quackery that comes from Crawley.

Unfortunately, this paper seems to have been written to justify the claim that they need to provide resources to 'educate' patients and medical staff with. None of the proposed materials were available, but judging by the FINE trial, there's a good chance that they will be misleading, make life worse for patients, and lead more people to see us as ungrateful bastards because their treatments are so ineffective.

Appendix A. Appendices 1 and 2 outiine the content of the
materials developed by the research team which are
currently being evaluated for the acceptability
A.1. Appendix 1
E-learning resource for GPs and other health care professionals, containing guidance and
information on how to diagnose and manage patients with CFS/ME. This includes:
–
Key messages from qualitative work talking to patients, carers and specialist practitioners,
and distilling the available evidence.
– An overview of the evidence base
– An overview of the symptoms of CFS/ME
– A link to the NICE guidance
– A description of how to make the diagnosis, and the importance of the diagnosis
–
Pod casts to show descriptions of what it‟s like to have CFS/ME (with actors playing the
role of a carer and patients with mild and moderate CFS/ME to preserve anonymity. The
service user co-investigator in this study presented her experiences as a patient with severe
CFS/ME)
– Sound bites of patients describing what it is like to experience the symptoms of CFS/ME
– Information of the impact of CFS/ME, for patients, carers and the economy.
–
Management options for: fatigue, sleep, pain, cognitive dysfunction/memory problems,
stress and anxiety and diet and nutrition. This will provide advice on activity and rest, the
idea of working towards recovery and includes guidance on referral and signposting to
other services. Information can be printed off as A4 leaflets to give to patients
– Supporting the patient to manage setbacks
– Support for carers
– Referral to specialist services
– Health beliefs
– Top tips from patients in managing their condition
– Making the GP practice accessible to CFS/ME patients
– The role of primary care in diagnosing and managing CFS/ME
– Useful links and resources.

They just wasted so much research funding on a programme for 'working towards recovery' which failed to help patients, wasted everyone's time and energy, and left medical staff resenting patients... and they're still trying to educate others about their views on 'Health beliefs' and the 'idea of working toward recovery'. Who cares about the idea, when they fail so badly at the reality?