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If you were misdiagnosed with ME or CFS or Fibro

Postby georginaadams on Sat Aug 17, 2013 5:29 pm

I was reading that 'ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC)'

http://phoenixrising.me/archives/18222

and it made me think about all the people who have been diagnosed with ME or CFS or Fibromyalgia.

What I want to know is whether the recommended management in the Guidelines by NICE would actually be doing harm to people who really had MS, Coeliac Disease, hypothyroidism, Crohn's Disease, Cancer etc if the treatments ie CBT and GET were administered by 'trained therapists' who were actually dealing with a disease which wasn't ME or CFS or Fibromyalgia.

For example, would graded exercise exacerbate the arthritis symptoms of someone who was really suffering from IBD which could happen because a lot of people diagnosed with ME or CFS or Fibromyalgia also have bowel problems which are thought to be IBS and not Inflammatory Bowel Disease.

I would be grateful if anyone can let me know the answer to this.
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Re: If you were misdiagnosed with ME or CFS or Fibro

Postby georginaadams on Tue Aug 20, 2013 2:25 pm

The reason I asked the above question is because I really worry about any psychological or physical damage which may occur if what is originally diagnosed as CFS later turns out to be something else.

I would still be grateful if any of the experts could answer this. You see, I understand that it is quite common to be misdiagnosed with CFS.
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Re: If you were misdiagnosed with ME or CFS or Fibro

Postby Dr Charles Shepherd on Tue Aug 20, 2013 2:40 pm

George

Yes, misdiagnosis is a significant issue and it's not helped by having such a wide range of clinical presentations and disease pathways coming under the umbrella of ME/CFS

As I keep saying it's rather like stating that everyone with joint pain - rheumatoid arthritis, osteoarthritis, infective arthritis etc - has a 'chronic joint pain syndrome'. In other words, the same disease process is going on and anyone with chronic joint pain therefore requires the same treatment. Which clearly isn't the case in relation to joint pain or ME/CFS.

This is why the MEA goes into very detailed guidance re history taking, investigations and examination findings when it comes to the clinical assessment of someone who might have ME/CFS. We also have a big section on differential diagnosis of ME/CFS in the MEA purple booklet.

Giving someone a diagnosis of ME/CFS when they do have another condition, which may respond well to suitable treatment (eg hypothyroidism), is clearly not acceptable.

But I'm afraid this situation will continue whilst medical education about this illness remains where it is

MEA website and pdf literature form: http://www.meassociation.org.uk
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Re: If you were misdiagnosed with ME or CFS or Fibro

Postby Dr Charles Shepherd on Tue Aug 20, 2013 2:45 pm

From MEA purple booklet: Differential Diagnosis of ME/CFS:

DIFFERENTIAL DIAGNOSIS

Although extensive and elaborate investigations are seldom required, other causes of chronic fatigue must be considered where the history is atypical. Also remember that ‘new’ symptoms should not automatically be ascribed to ME/CFS.

In children and adolescents, the differential diagnosis may also need to include more unusual conditions such as Ehlers Danlos syndrome (where there is associated joint hypermobility, hypogammaglobulinaemia and postural orthostastic tachycardia syndrome/POTS).

The importance of considering other possible diagnostic explanations is illustrated in this conclusion from a review of clinic attendance and diagnosis at a specialist ME/CFS referral centre in Newcastle (Newton et al 2010):

Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses); 20% had primary sleep disorders, 15% psychological/psychiatric illnesses and 4% a cardiovascular disorder. Thirteen per cent remained unexplained (5.2% of the total referrals). This study found a significant increase in the proportion of patients referred to National Health Service (NHS) CFS services diagnosed with CFS. A large proportion of patients presenting with fatigue are not eligible for referral to the Department of Health specialist fatigue services, which represents an unmet need in terms of symptom management in current NHS services

This is followed by a list of 50+ conditions that can present with chronic fatigue and ME/CFS-like symptoms
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