Getting Diagnosed with CFS/ME

Assuming you've had people disbelieving you for years and you are close to giving up.... Or it's new and you aren't sure how to go about getting help....

STEP 1: KEEP A LOG OR LIST OF YOUR SYMPTOMS

Doesn't have to be fancy. Just what happened, when and how it affected you/ your life.  Use this when you go and see your GP - take a copy to give to them.

STEP 2: SYMPTOMS - NICE GUIDELINE CG53 CFS/ME 

The Chief Medical Officer believes ME/CFS exists. That it is real and needs treatment.  Your GP is supposed to follow the NICE Guideline in treating you - so it's worth knowing what it says!

Guideline section on Symptoms HERE


Note: I know, people criticise the NICE Guideline and prefer other criteria or symptom lists or whatever.  In practical terms though, you can enforce the Guideline, not anything else - you need practical help to deal with the symptoms and we have to work with what we've got!

STEP 3: TESTS FOR DIAGNOSIS

Tests are done to EXCLUDE other diagnoses.

Usually the Tests are done as part of a referral to a specialist (see below)

Your local NHS area may have their own CFS/ME Unit, and they may or may not have information online about it.

For example, King's College Hospital London CFS Unit has a Referrals page HERE:

KCH London CFS Unit suggests these tests:
[start extract]
All patients:

FBC, ESR or CRP, U & Es, LFT, calcium, albumin, creatine kinase, thyroid function tests (TSH and free T4), local coeliac screen (e.g. IgA endomysial autoantibodies), random blood glucose, urinalysis for blood, glucose and protein.

Can be helpful: EBV serology, Chest X-ray, Rheumatoid factor, ANF, CMV, toxoplasmosis, HIV serology.

Not helpful: Enteroviral serology, VP-1, neuroimaging.

Medical referrals: As clinically indicated

[stop extract]

If there's other illnesses as well, expect the CFS/ME referral to be the LAST one that's made.  This is because if you have other illnesses that are diagnosable and treatable, they'd rather deal with those first.

STEP 4: REFERRAL TO SPECIALIST

Your GP should refer you to a relevant specialist interested in CFS/ME - your NHS area may have a specific unit, or it may just be one or two consultants in very different fields.

NICE Guideline on Referral HERE

Top Tip: Do some research, find out which consultants deal with ME/CFS in your area and IMPORTANTLY find out what their interests are, and whether you think you'd be happy under their care.

Why? Because there's no agreed cause, a consultant's 'hobby horse' can be very difficult to deal with if the treatment doesn't suit your particular variant of ME/CFS and your world view about it.

How to find out? Search the internet, join your local ME/CFS Support Group, ask your local PALS (Patient & Liaison Service) or your GP for the name of the specialist.

ME Association list of Specialists/ Units HERE
Action for ME Services Directory HERE

STEP 5: THERE'S A WAITING LIST?

You don't have to wait for a diagnosis. Life carries on!  All the treatments that are offered are in the nature of 'lifestyle management' and there's nothing to stop you starting that early, whether you actually have CFS/ME or not - just be careful not to make yourself worse - you might have something else so be careful.

There are things you can do in the meantime, some ideas are:

• Learn to conserve your energy - pace yourself, alternating rest and activity. Think about how you can do things differently, to make life easier for yourself.
• Pain and mood are linked. The changes CFS/ME causes in your life, even before diagnosis, can be terrifying and difficult to deal with.  If your GP suggests prescriptions or talking therapies or time off work to help you cope right now - don't dismiss them out of hand.  They might be additional tools in the toolbox that will help in the short or long term.
• Cut yourself some slack.  If you had a broken leg, you wouldn't be running for a bus.  With ME/CFS, 'pushing through it' doesn't work.  You will end up more ill, eventually, though it might take weeks or months to show up. And without wanting to scare you, many CFS/ME sufferers find that they can't get back to the level they were at before a 'relapse'.  

Also the NICE Guideline explains how CFS/ME symptoms should be managed HERE

An Action For ME booklet about Pacing yourself HERE 

STEP 6: WHAT HAPPENS ON REFERRAL?

NICE Guideline expects HERE you to be involved, and for care to be tailored to your needs (as far as possible).

Have a look at your local hospital website to see if they have any information about what happens next.  King's College Hospital have a page about Referral HERE - scroll to the bottom.

As you can see, KCH offer CBT - they're based in the Maudsley Psychiatric Hospital and are mostly psycologists.  So if that's all they offered (you'd have to ask), you might want to go somewhere else that offers more physical therapies etc.

There was a medical trail called PACE which looked at 4 sorts of treatment - Standard Specialist Care (ie advice), Adaptive Pacing (finding a baseline and staying stable), Graded Exercise Therapy (building up to doing more) and Cognitive Behavioural Therapy (CBT). 

The NICE Guideline is built around the outcomes of that Trial.  

Ignoring the politics of that, and there's a lot, the NICE Guideline apparently assumes that the Therapist and Participant manuals from the PACE Trial are 'best practice'.  

So, it's worth knowing that you can access those Manuals HERE - you can use them to see what to expect from a particular treatment and to benchmark what you're getting against what NICE Guideline thinks you should get.

STEP 7: CAN I CHOOSE A DIFFERENT NHS AREA?

Tricky one. It's a lot easier to do if you don't have any specialists or units in your NHS Area.  You might want to do it because you don't like/ it doesn't suit your personal form of ME/CFS.

The NHS has a scheme called Choices HERE that sometimes allows you to go outside your NHS area for treatment (assuming you're well enough to travel!)

STEP 8: OTHER IDEAS?

The NHS has other schemes:

• Expert Patient Programme (people with long term illnesses to self-manage) HERE. You can self-refer
• Pain Clinics (for people with chronic pain) HERE GP has to refer you.  The British Pain Society has information HERE
• Talking Therapies (to cope with the mental strain of having a long term illness and the knock-on effects) HERE You can often self refer, ask your GP what's available or the receptionist for a leaflet.
• Patient Liaison Services PALS can help you find what you need HERE
• NHS has a whole section on long term illnesses HERE
• Social Care - you don't have to wait for a diagnosis to get help (though it makes it easier).  You can self refer to your local Social Services - look for Adult Social Care on your local County or Borough Council website.