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Mis or Missed Diagnoses?

To enable correct diagnosis then a standard set of diagnostic guidelines needs to be in place.
If the definition of the illness is vague (if the name is not agreed upon, the symptoms therefore not agreed, the diagnostic criteria not standardised) then, of course, the diagnosis and the treatment will be liable to be incorrect.

Misdiagnosis is a known problem with ME.
Missed diagnosis is an additional risk once the ME label is given to a patient - something that only increases in risk the longer a patient is left to their own devices in managing the disease.

The lack of usage of a common set of guidelines has also allowed too much flawed research to be funded thus wasting valuable time and money.
This has been a major obstacle in obtaining progress for people with ME and has allowed far too many cases of missed or misdiagnosis to occur.

Misdiagnosis of M.E. & Missed Diagnoses of Other Diseases

Adapted from an article by Jo Best

There is a high rate of misdiagnosis of Myalgic Encephalomyelitis and of doctors missing other medical conditions, either at onset or over the years of having the disease.

ME is a “serious and life-threatening disease” (FDA) in itself, but several symptoms overlap with other medical conditions, some common, some very rare, many treatable.

The right diagnosis could mean better treatment and save years of extra suffering.

Barriers to correct diagnosis and follow up include: -

No lab tests yet to confirm ME diagnosis, poor quality diagnostic guidelines for doctors in most countries, often only basic tests done to rule out other possible causes of symptoms.

The focus on chronic fatigue when this is a symptom of thousands of other diseases.

ME affects most bodily systems so several symptoms overlap with many other diseases which may be neurological, muscular, autoimmune, endocrine, metabolic etc.

Once diagnosed with ME, new symptoms are often attributed to the illness or not taken seriously instead of being properly investigated.

Disregarding of WHO classification of ME as neurological and treating ME as psychosomatic or bio-psycho-social (physical symptoms caused by psychological, social or behavioural factors) and dismissing outbreaks as cases of mass hysteria.
Note: beware diagnosis of Functional Neurological Disorder (FND) as 'functional' here means 'psychosomatic' as they say they can't find anything physically wrong.

Broader context of cost-cutting policies in public-funded health services and by private health/disability insurers, advised that treating ME and other so-called 'medically unexplained' or 'functional' illnesses under mental health is appropriate and cost effective, so ME is not the only illness lacking proper or early diagnosis and medical care.

It will help everyone when there are lab or clinical tests to distinguish ME from other diseases, and correct official guidelines for doctors.

Meanwhile patients may need to do their own detective work and also try to find doctors willing to work with them for correct diagnosis and follow up.

The Canadian Consensus Guidelines (CCG) and the ME International Consensus Criteria (ME ICC) are good resources to check ME diagnosis and exclusions.

Note: even if patients fit these criteria, they may still have other conditions with the same symptoms, so they need to be re-evaluated.

There are online symptom checkers like this:

This is a symptom checker site for rare diseases:

Medical conditions found in people originally diagnosed with ME have included the following (bearing in mind that people can genetically inherit or get more than one disease):

  • -Auto-immune diseases: Lupus, Sjogren’s syndrome, Coeliac Disease and Behçet's disease

  • -Common variable immune deficiency

  • -Brain tumour

  • -CD3 and CD4 deficiencies

  • -Fabry Disease

  • -Haemochromatosis

  • -Hughes syndrome

  • -IgG subgroup deficiencies

  • -IgG and IgA deficiencies

  • -Lyme Disease

  • -Mannose binding lectin deficiency

  • -Metabolic diseases

  • -Multiple sclerosis

  • -Peripheral neuropathy

  • -Pituitary gland malfunction

  • -Pituitary tumours

  • -Polycythaemia

  • -Q Fever

Adapted from The M.E Chat Room Facebook Group File in November 2018.
Group admin Julia Browell had wanted to create a group file on this topic for reference, but sadly lost her life to the complications of ME in July 2017, so this file is in honour of her memory and we hope it helps.
Julia was a great advocate and activist for ME.

"It is only if health professionals are willing to open their minds to widen their knowledge when faced with patients with problems as complex as ours that they will be able to arrange correct referrals and investigations."

The above is from CHRISTINE’S LEGACY a story from Jill Mizen about her friend.

Christine was in contact with the charity many years ago and we had numerous discussions and the charity provided information and encouragement in her pursuit of recognition of her condition.

Christine was misdiagnosed with CFS, and it was only much later, thanks to Professor Malcolm Hooper’s help, that she was correctly diagnosed with hypopituitarism.

Her friend Jill also suffered that fate and the story of this, recently updated, is here.
Further Reading:

Please note the site Dislaimer

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