ME Australia blog post, by Sasha Nimmo, 13 September 2016: Severe ME: Suffering ignored and denied help

Myalgic Encephalomyelitis is estimated to affect between 0.4% and 1% of the population, according to the International Consensus Criteria primer for medical practitioners, endorsed by Australian patient organisations. In Australia, that is between 96,700 and 241,800 people (ABS population figures). Of those, 25% are so severely affected that they cannot leave their homes or even their bed.

Between 24,000 – 60,000 Australians have severe ME.

Speaking to patients around Australia, a major hurdle is simply finding a GP who can visit them at home for basic medical care.

“The most difficult thing for me when I was completely bedbound was having no medical professional who could come and see me as I was too ill to travel to the doctor. Advocating for myself to receive basic medical care was exhausting and stressful and very taxing on my health,” patient in Victoria.

“What frustrates me most is how many doctors just do not understand how much we deteriorate after each visit, even if they say they understand severe ME. If they did they would do home visits,” patient in South Australia.

“My GP said he’d be able to visit me at home as he could see I was deteriorating and getting to his practice was difficult. But when I rang to book a home appointment, he wouldn’t see me at home and I was left without any medical care and without any help from the practice to find a new GP.”

“The pain medication I was on ran out, leaving me in severe pain and unable to walk the couple of steps to the kitchen to get food and water,” patient in the ACT.

“I cannot see a doctor at the time I’m having symptoms because I’m too unwell to get out of the bed and get ready for the appointment. Of course, I’m looked at with suspicious eyes when my symptoms ease and I can get in for an appointment.

“I don’t have medical degree or training so that I can explain my suffering the way they can get it…” patient in Queensland.

All of these patients would only speak on the condition of anonymity.

“I wish to remain anonymous as I don’t want to be mistreated by healthcare practices and/or government agencies for advocating for ME anymore,” patient in Queensland.

For those who can find doctors, finding ones who understand the impact is hard.

“Educating doctors about ME, and particularly severe ME is crucial to patients being able to access appropriate care, which is sensitive to the unique disabilities severe ME brings,” patient in Victoria.

“Canberra is the national capital but there are no specialists who know about ME here,” patient in the ACT.

“If the hospital and Disability SA had accepted how much I needed an electric wheelchair ages ago when I tried to apply repeatedly, both through hospital OT and Disability advocate from MALSSA, then I would not have deteriorated so far. Sad really, probably common everywhere. People overseas I think have the impression Australia, especially Adelaide, has all these researchers. That doesn’t matter if none understand severe ME and can visit,” patient in South Australia.

“I’m scared, to be honest,  as no one really seems to understand just how really dangerous severe ME is,” South Australian patient.

“All specialists I have been referred to (psychiatrists, cardiologists, neurologists, rheumatologists) either had the wrong idea or had no idea about ME nor CFS and they are supposed to deliver the best care for the patients,” South Australian patient.

“Sadly, the NCNED Clinic has closed its doors due to overwhelming demand. We need funds to train more clinicians and establish facilities, hopefully one in each state/territory.

“Very rare GP specialists are very expensive, too far to travel, and possibly their diagnosis and treatment protocol are not the same,” Queensland patient.

What is needed: education, in-home support and policies for hospitalisation

“We need Centre for Excellence in ME in Australia, where medical and healthcare service providers can rely on facts and case studies about ME. I hope NCNED will take up on this role.” Queensland patient.

Patients say they need:

• Standardised, up-to-date diagnostic criteria
• Safe and effective treatment/management guide
• Designated ME specialists in Australia
• In home care for cooking, cleaning, community care of patients with staff who are educated in ME sensitivities e.g. noise, light, chemical sensitivities (some patients  have been denied services as they asked for no perfumes/deodorants and the care service refused to comply under ‘occupational health and safety policies’
• Nursing assistance for administering medications/bathing etc.
• Regular in-home treatments which are affordable e.g. saline infusions for POTS
• Case management services to coordinate all of the severe patients’ needs so they (or their carers) don’t have to organise all of this when they are cognitively compromised
• 24 hour care for the most severe patients
• Respite care for carers of severe patients
• Hospitalisations where patients are located in suitable rooms, for example on the infectious disease wards where they are away from other patients, noise, light and the risk of infection is kept low
• In-hospital care for severe patients that does not involve contempt from treating doctors and numerous visits from psychiatrists
• Provide the right and critical information about severe ME for DSP/NDIS approval
• Financial support for mobility aids (items such as slings for beds, railing, noise cancelling headphones, heated rugs, cooling vests, mattresses designed for bedbound people to prevent pain/bedsores, walkers, reclining electric wheelchairs) climate control at home, noise control at home and for off label prescriptions, which are still very expensive for people with financial challenges, which most severe ME patients have.
• Attitudes impacting health
• Misinformation and ignorance about severe ME make it much more difficult to access healthcare, services, insurance payments and daily living support.

“Having to negotiate my way through application for disability payments and also then temporary and permanent disability insurance applications was horrendous and impacted my health,” Victorian patient.

“From the treatment I received and experienced, severe ME doesn’t exist in Australia. They have no idea about our suffering and many are seriously and dangerously confused it with depression or other mental illnesses. And they don’t listen to me when I explain. They deny my experience and suffering as if I was making things up. But, I think this is the general attitude towards chronic illnesses in society; if you don’t get better, die quietly.”

Outdated, harmful government guidelines

Nationally, in the 1990s, the federal government commissioned guidelines. In 2002 the Australian chronic fatigue syndrome clinical guidelines were published and adopted by the the National Health and Medical Research Council. They were heavily criticised for having a bias towards the psychological, dismissing biological evidence and omitting severely affected patients.

At the moment, Australia has no official government clinical guidelines as they ‘expire’ after 10 years and the government has not replaced them.

I asked state government health ministers questions about caring for people with severe ME. WA and Tasmania were the only states to respond. Their answers show they are using potentially harmful treatments and have no clinical criteria for diagnosis. Instead, they consult papers which refer to ‘contested illnesses’, despite the fact that Myalgic Encephalomyelitis has been recognised by the World Health Organisation since 1969. The guidelines on the WA health website recommend psychological treatments for children, which have no basis in science.

Read more about care for people with ME in regions of Australia