Psychology and ME/CFS: Not all in the mind... Alex Howard Dr. Megan Arroll

Psychology and ME/CFS: Not all in the mind... Alex Howard Dr. Megan Arroll

Personal Stories Alex

Psychology predisposing factors Energy depleting psychologies are ways of relating to the world that burn more resources than they generate Often people are unaware they are doing them as they are just how they are The issue is not that these things are intrinsically wrong, the key here is around balance These were originally observed through clinical experience, and then supported via research

Achiever subtype Constantly push themselves to do and be more than they are currently capable of Characterised by an inability to be in the moment to be in the moment and enjoy what is.

Helper subtype Tend to constantly place the needs and wants of others above their own Value themselves by their help and supporting of others, which is at the detriment of their own state of balance and wellbeing Tends to be chronic pattern and an identity, as opposed to just response to acute situation

Anxiety subtype Have an internal sense of fear, danger and threat Deal with this by either being outwardly fearful, or by becoming the opposite, and constantly trying to convince themselves and others they are not afraid We will cover research on this when discussing MSR

Trauma subtype Can either have suffered a major event, such as a natural disaster, or some kind of physical, mental, emotional, or sexual abuse, or what is known as developmental trauma

Trigger events For some people there is no trigger event, it is a result of gradual onset For many there is a trigger event such as: Emotional/mental trauma Severe stress Vaccination/drug reaction Physical accident Virus Environmental toxins

Perpetuating Factors/Maladaptive Stress Response This is a state of heightened anxiety in the nervous system which effectively puts the body into the exactly the opposite state it needs to be to heal Simply put this is a state of sympathetic nervous system over-arousal It is chronic, affects multi-systems, and is often unconscious This is probably the most misunderstood and problematic area in ME/CFS different perceptions of this have led to severe mistreatment, misunderstandings and significantly further compounded the difficult experience of those affected

The inner experience of ME/CFS Frightening symptoms such as fatigue, muscle pains, dizziness etc Why have you got them/what is the cause? How long will they be there for? What should you do about it? We are used to going to a medical doctor and being given certainty, this suddenly evaporates

The inner experience of ME/CFS Culturally there is a huge amount of misunderstanding about ME/CFS It s all in your mind It s not a real illness You are just being lazy We all get tired sometimes We can t underestimate the huge impact this has it takes away emotional/psychological support, affects attitudes to research funding, makes it increasingly difficult to access benefits etc

What do we do about this from psychology perspective? 1. Understand the individual situation 2. Address MSR 3. Explore any trigger events still going on 4. Understand and bring into balance predisposing factors

Current (full) study London-based clinic; psychological, nutritional and combined treatment 138 participants (110 females, 79.7%; mean age 42.86 years; mean illness duration 9.52 years) Medical Outcomes Survey Short-Form 36, Multidimensional Fatigue Inventory, Multidimensional Health Locus of Control Scale, CDC CFS Symptom Inventory Measures completed at baseline and 3- month follow-up

OHC Psychology Approach 3-month intervention; combination of Neuro-linguistic Programming (NLP), Emotional Freedom Technique (EFT), life coaching and hypnotherapy/self-hypnosis Delivery: series of group sessions, online support forums, one-to-one sessions, telephone sessions (flexible, tailored) Option1: 13 hours of practitioner contact time in a mix of group training in person, group telephone conference calls and oneto-one telephone/skype sessions, Option 2: 4 hours of one-to-one telephone/skype sessions Option 3: 3 hours of in-person sessions All participants had access to various support materials which included CDs and online resources. The amount of time spent on these was patient-led, approx. 6 hours

OHC Nutrition Approach In person, telephone or Skype Initial consultation includes analysis of GP tests, full clinical questionnaire etc. Ongoing consultations every 6-12 weeks Functional medicine perspective (embracing integral map!) using range of lab tests and home tests, supplements, diet programmes etc. OHC approach is an ongoing evolving protocol with seven practitioners working around 4 days a week each at OHC

Findings Overall: sig change from T1 to T2 in all functional and fatigue measures; 15 symptoms; internal and doctors LoC Psych gp: sig change in all fatigue and most functional measures; 5 symptoms; internal and chance LoC in expected direction Nutrition gp: sig change in all fatigue and some functional measures; 7 symptoms; no LoC Combined gp: sig change in physical fatigue and 4 functional measures; 5 symptoms, no LoC

Observations and Limitations Psychology saw more variables change over time than nutrition and combined group even though small sample size Not randomised No control group High drop-out rates (47.83%), notably in psychology group (2/3 dropped out) Need for 6- and 12-month follow-up Privately funded

Where do we go from here? Clinical development is ongoing and will always be The next big breakthrough is not going to be clinical, it will be social For CAM or Integrative Medicine to move forwards it has to change strategy, we have vast numbers of people internationally development clinical knowledge, the issue now is how do we organise all this information and make it possible for people to access

Threats to CAM 1. Advertising Standards Authority 2. Medical directive 3. Medical claims 4. Regulation CAM cannot continue as it is. On the current trajectory, there is no future.

Opportunities to CAM NHS is effectively bankrupt ageing population, significant increase in chronic illness, global recession which is here to stay Government understand this and thus biggest shake up in NHS s history Any qualified provider can pitch to provide services If you can provide a clear justification for funding by demonstrating effectiveness, NHS funding will become available. CAM is actually strongest where the NHS effectiveness gap exists.

It comes down to research The next critical step in this process is ultimately research If we want to speak the language of traditional medicine, we have to speak the language of research We also have to raise our standards and behave with the same ethics as traditional medicine (which actually means not making unsubstantiated claims and providing evidence wherever possible)

What OHC is doing towards this OHC clinic has been donated to OHC Foundation This means we can fundraise to do an RCT We hope that on the back of this we will be able to get NHS funding for treatment This will be game changing for CAM, as once funding opens up the whole field will change