Severe ME: Suffering ignored and denied help

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.

Do you keep any figures of the population with ME and with severe ME?
WA: No. There is no systematic registration of all patients with this specific diagnoses. ME is part of a broader syndrome of “medically unexplained symptoms”. These include collections of symptoms that can be quite disabling but do not have a clearly established cause, nor accepted diagnostic criteria.

TAS: DHHS does not keep figures of the population with ME. Services are available through general practitioners and there is also the group Emerge, which is based in Victoria. (They also provided the link to a Tasmanian Facebook group.)

QLD: The Department of Health does not collect data on the number of Queenslanders that suffer from ME.

What services are there for people with severe ME?
WA: The services available are similar to those for all patients with “medically unexplained symptoms”.  Patients have access to outpatient and emergency consultation, and a range of diagnostic services. Inpatient care is used when required.

QLD:Living with persistent pain such as ME, Chronic Fatigue Syndrome and Fibromyalgia can be debilitating and have an enormous impact on people’s daily life, working life and education.

The chronic illnesses can be managed with medication, education and support in the primary care setting by general practitioners, private allied health providers, domiciliary nurses and complementary/alternate therapists. Some patients generally or periodically do not respond to first line therapies, for these cases, specialised treatment services are ideally provided by multidisciplinary teams who have the skills and ability to provide comprehensive assessment and treatment for patients with persistent pain problems.

A number of Queensland Hospital and Health Services offer Persistent Pain Management Services (PPMS) inclusive of consultative, time-limited treatment and management advice. PPMS are for complex persistent pain patients who require a multidisciplinary approach for the management of their pain. These services expect patients to take an active role in learning self- management techniques.

Work is underway on the Statewide Persistent Pain Service Action Plan 2016-2019, which will build on the unprecedented commitment of the Queensland Government in the 2010-2011 budget, when $39.1 million was allocated to help sufferers of persistent pain, and will establish key support structures for persistent pain services.

If a person with ME is unable to care for themselves, or make arrangements for carers, what would happen to them in Western Australia?
WA: A referral would be made by their doctor to community based nursing services, and potentially to a medical rehabilitation service.

Regarding the extreme sensitivities ME patients can have to noise, light and some foods, are there guidelines for medical professionals or hospitals? (like there are in Canberra Hospital for people with multiple chemical sensitivities)?
WA: WA Health does not have specific services dedicated to myalgic encephalitis but a number of clinical services provide care to patients diagnosed with ME. The majority of care for such patients takes place in primary care and specialist outpatient care outside of the public health system.

The Department’s Chronic Conditions Framework 2011-2016 outlines the health service components common across chronic health conditions, with a view to promote their optimal management. The policy objectives include service coordination and integration and promotion of self-management skills.

Guidelines for the managed of medically unexplained symptoms have been published in Australia. (Stone L. Managing medically unexplained illness in general practice.  Aust Fam Physician. 2015 Sep;44(9):624-9.  Stone L. , Blame, shame and hopelessness: medically unexplained symptoms and the ‘heartsink’ experience. Aust Fam Physician. 2014 Apr;43(4):191-5.).

Medical research has indicated that cognitive behavioural therapy and graded exercise therapy represent safe, moderately effective interventions that can be considered in the management of medically unexplained symptoms. However, WA Health policy does not have a policy that mandates the use of these treatments.

The Child and Adolescent Health Service has a set of clinical guidelines to direct management of young people with chronic fatigue syndrome.  These are similar to guidelines used elsewhere in Australia.   

QLD: At present there are no guidelines or protocols to specifically address the management of ME. This is because in Queensland, the management of chronic disease such as ME is predominantly provided in a primary health care setting through general practitioners and the community.

Hospital and Health Services provide access to treatment for all patients who present requiring healthcare including those with ME and I am pleased to say all patients treated within the Queensland Health system are provided the highest quality of medical care available.

WA senator, Scott Ludlam, raised the issue in federal parliament, is this something the federal government should be taking more responsibility for?
WA: Current demands do not indicate there is a need for an increased level of State or Commonwealth services in this area.  Available data indicates that fewer than 30 patients are hospitalised each year across WA.

Representation and help from patient organisations

“We need Australian Severe ME support/advocate body, something like 25% ME Group in the UK. But, before that, we need Australia-wide ME support/advocacy body,” a Queensland patient.

South Australia’s patient society explained that providing these services is difficult, as their income is from donations and occasional grants, and most of their volunteers are ill.

“South Australian society members have participated in successfully lobbying the federal government for distance medicine services for Australians who are housebound due to chronic illness, services that were previously only available to people in rural and remote Australia. These email and video-conference medical services are slated to become available as part of the changes to chronic illness service delivery that started in trial form in July 2016 and are expected to roll out more widely during 2017.

“The NDIS has only become more widely available in SA since July 2016 and it is too early to judge its impact. The society continues to lobby federal and state politicians and have been in touch with several.”

Also in South Australia, Bridges and Pathways are setting up the South Australian Clinical and Research Centre and Clinic and a new project working with a university provider team to establish telehealth programs for severe ME.

Emerge Australia, based in Victoria, has a page on severe ME. Emerge and the ACT society are the only two organisations who have paid staff members.

Queensland’s society’s representative was not well enough to respond and there was no response from WA, NSW or the ACT societies.

ME/CFS Australia is in the early stages of reorganisation, after several years of inactivity, so is unable to offer assistance at this stage.