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We need to start talking seriously about ME/cfs and how this impacts our lives, our family, our work and it’s all part of the same puzzle, we all need to listen, to react, to be inspired and to be assured

Not all doctors will be a good fit for ME/cfs patients. Let go of the high expectations, otherwise we will be disappointed.

We can’t simply bounce back but we can learn, behaviours thoughts and actions – positive self-view means we persevere through tough times and we are not resentful, but we are resilient.

Unfortunately, 90 % of cases of ME/CFS are thought to go undiagnosed and untreated. Some Drs continue to believe CFS does not exist. Doctors are here to support you and do their best to treat you. We need to remember; our primary care provider isn’t our therapist.

But is ME/cfs a mindset? What are your options?

Key takeaways

• We need to try and deal with the facts rather than emotions
• Drs need to empower patients about the realistic possibility of improving their condition
• Drs can suggest ways to relieve some symptoms, but they won’t always have the answers
• Not all Drs are taught or trained about ME/cfs, and Drs may be able to learn from your experience, we all need to learn to be patient
• From a patient’s perspective, what are the most important things a GP needs to know about ME/cfs
• ME/cfs is a serious multi-system neuro-immune disorder and is not a mental health problem
• ME/cfs is usually triggered by a viral infection, causing muscle fatigue, pain and neurological symptoms, for example short term memory loss, brain fog and lapses in cognitive thinking
• There is no diagnostic test for ME/cfs, but there are clear guidelines to help Drs diagnose the condition, once they have ruled out other conditions with similar symptoms
• ME/cfs is not in your head, you cannot fix it by sleeping it off, or sweating it out through exercise, CFS can be seriously debilitating
• We need to encourage things that do work and eliminate things that don’t, it’s a gradual process of elimination
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

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Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)