Further investigations?

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I've noticed that two papers have been published relatively recently from specialist ME/CFS clinics saying that the mis-diagnosis rate is almost 50%. ("The Newcastle CFS Service - Not All Fatigue Is The Same" 2010 J R Coll Physicians Edinburgh 40:304-7, and "Alternative Diagnoses to CFS In Referrals To A Specialist Service" 2012 J R Soc MedSh Rep 3:4)
My GP has always been extremely resistant to doing any kind of further testing/investigations....do you think it is worthwhile using my precious energy to follow this up and try to get my GP to agree to more tests? I have various symptoms which i don't feel have ever been investigated, it all just gets lumped under unexplained CFS symptoms. Thanks!

[Dr Charles Shepherd]

When it comes to clinical assessment and making a diagnosis of ME/CFS there are three groups of investigations.

First is a list of blood and urine tests that everyone should have before a diagnosis is confirmed.

Second is a list of blood, urine and neuroimaging (ie brain scans) investigations that should be carried out when there are signs or symptoms that are not typical of ME/CFS, or are more pronounced than one would expect to see in ME/CFS.

Third is a list of investigations that are often mentioned on internet discussion forums but are not normally recommended or used within the NHS. Some of these investigations are quite costly and are of very dubious value.

The MEA booklet: ME/CFS/PVFS - An Exploration of the Key Clinical Issues has a three page investigation section that summaries all of these investigations along with a table of conditions that can be misdiagnosed as ME/CFS. The differential diagnosis section also covers the research report from Newcastle you quote in more detail.

As part of our campaign to educate the medical profession about ME/CFS we can send a free copy of this booklet to your GP.

MEA website: http://www.meassociation.org.uk

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Thanks for your response Dr. Shepherd, it would be great to see these lists you mention as I don't feel confident that my GP is overly concerned....I will order a copy of the booklet for myself. That's fantastic that a free copy can also be sent to my GP....how would I go about organising that? Thanks again for your help, much appreciated!

[Dr Charles Shepherd]

MEA clinical guidelines booklet:

http://www.meassociation.org.uk/?p=4038

Contact MEA HQ if you want a free copy sent to your GP - we still have funding available to do this work

[snailspace]

Ok, thanks.