Access to a CFS Specialist

[sparrowhawk]

In 2002 I was diagnosed with Coeliac Disease and had been suffering with this for about 6 years and so was very weak and had lost a lot of weight. On a GF diet I was still very weak and at first I was told that it would take time for my body to heal. After 6 months the GP diagnosed me with CFS as I had still not improved and was suffering fatigue after exertion, disturbed sleep patterns,brain fog and cognitive difficulties. The only pain I experience is muscle aches after exertion.I was sent on a pacing course run by a physiotherapist which helped manage my symptoms and avoid the crashes I was experiencing through pushing myself too hard. I have not improved at all since and have never had any tests to rule out other things. My gluten free diet is well managed and my consultant says it is not the coeliac disease. My Gp did refer me out of area to a specialist clinic about 2 yrs ago, but the funding was refused.
There is a private cfs clinic in my area but as I had to give up my job I need to see someone on the NHS. I cant help but wonder if something has been missed as I have not had any tests and would like to know what rights I have to see a specialist on the NHS and what tests I should be requesting my GP should do.Any advice would be appreciated.

[Jessica Bavinton]

Dear sparrowhalk

The NICE Guidelines for CFS/ME give you an idea of the tests that should be done to inform your diagnosis. These are quoted below: (p140+)

The following tests should usually be done:
• urinalysis for protein, blood and glucose
• full blood count
• urea and electrolytes
• liver function
• thyroid function
• erythrocyte sedimentation rate or plasma viscosity
• C-reactive protein
• random blood glucose
• serum creatinine
• screening blood tests for gluten sensitivity
• serum calcium
• creatine kinase
• assessment of serum ferritin levels (children and young people only).
Clinical judgement should be used when deciding on additional investigations to exclude other diagnoses. [1.2.2.3]

Tests for serum ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency. [1.2.2.4]

Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis. [1.2.2.5]

The following tests should not be done routinely to aid diagnosis:
• the head-up tilt test
• auditory brainstem responses
• electrodermal conductivity. [1.2.2.6]

Serological testing should not be carried out unless the history is indicative of an infection. Depending on the history, tests for the following infections may be appropriate:
• chronic bacterial infections, such as borreliosis
• chronic viral infections, such as HIV or hepatitis B or C
• acute viral infections, such as infectious mononucleosis (use
heterophile antibody tests)
• latent infections, such as toxoplasmosis, Epstein–Barr virus or
cytomegalovirus. [1.2.2.7]

Re: finding a specialist - this isn't always easy, and you can take the NICE Guidelines to your GP or ask for a second opinion. If you had 'pacing' from a physio, and not GET or CBT, you could argue that you haven't had evidence-based treatment.

BACME lists the NHS services available:

http://www.bacme.info/localservices/

Good luck

[sparrowhawk]

Thank you for the advice. Now all I need to do is summon up enough strength and assertiveness to speak to my Gp.