Tag Archives for " ME/CFS "

ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour
This entry is part 1 of 2 in the series ME/CFS Awareness

Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.

I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading

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Why I don’t go to A&E when my ME/CFS flares

Why I don't go to emergency room for ME CFS flares BLOG

I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s often an unnecessary risk to your own health. Let me explain why I think so…Continue reading

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Are you struggling to adjust after an ME/CFS or PVFS diagnosis?

I am regularly contacted by people who have recently been diagnosed with Post Viral Fatigue or Chronic Fatigue Syndrome. They are often scared, worried and confused, but also hopeful and determined to return to their normal life. Their question is usually the same: what can I do?

Having a diagnosis of PVF or CFS is difficult to deal with because there is so little information out there and often doctors don’t know what to tell you. They haven’t been trained in the management of CFS and are often ill-equipped to give advice to newly diagnosed patients.

In this post, I will outline some of the main points you need to be aware of as a newly diagnosed patient. Things your GP might not tell you. I am not a doctor, but I am a patient, and I have spoken to many other patients with decades of experience in living with this condition.

Doctors call these long-term sufferers “expert patients” and the advice they gave was vital in my initial stages of PVF/CFS. I will summarise that wisdom below in the hopes that it will help many more.Continue reading

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Update on my itching and ME/CFS flare

Low spoon warning

It’s been a while since I wrote a personal update. I have recently been extremely drained and weak, so haven’t been very social or active online. My primary focus this month was on my itching. I wanted to try to get it under control as it was really getting me down, much more than my ME/CFS does. I was in tears and so very frustrated. The scratching was utterly exhausting and to top it off, I caused myself a massive ME/CFS flare too!Continue reading

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Natural Health Worldwide: healthcare for the housebound patient

Natural Health Worldwide, Healthcare for Housebound, ChronicallyHopeful

Natural Health Worldwide (NHW) is a new website that launched on 1 June, 2017. It is a portal which connects patients from all round the World with NHW health practitioners. These practitioners, also from all round the World, can be Medical Doctors, other qualified Health Professionals or Experienced Patients.

Each practitioner has an individual webpage where they can describe their qualifications, their experience and what they specialise in. Patients can search the site by type of practitioner and or illness/problem.

Appointments are booked through the website and can be conducted by Skype, Facetime, ‘phone or email. This makes the process very convenient and also caters to a forgotten patient population – the housebound and bedridden.

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