Looking for private ME specialist?

That's great that you can see a private specialist. I'm in the U.S. so can't help you with specifics. But an infectious disease specialist can be a good person to see. Although it's, of course, even better if you can find someone who is more specifically an ME/CFS specialist. 

It is the job of your GP to know who the specialists are in your area and if they don't they should find out. They are usually the same ones who work for the NHS!! If they still refuse speak to the Practise Manager and put it in writing as it will be raised at the GPs next appraisal by their assessor that they refused to recommend a CFS specialist. . Remember that you cannot self refer even privately so the GP has to write the referral letter!!!

In the mean time contact some of the UK ME charities and see if they can   recommend someone in their area. You can save yourself a ton of cash by making sure that the GP has done all the relevant blood tests and those results are included in the letter they send. Based on all the information my GP sent to the consultant he was able to confirm her diagnosis in one session so the cost was kept down Be warned blood tests in private hospitals can charge more than 8x the NHS rate, they can be mega expensive.

I only saw him the once, after that he referred me to an expensive ME nurse who was ok but in the end I sorted myself out after struggling for many years.

I waited a year to see the nearest Cfs/ME specilalist centre after being diagnosed by a Neurologist privately. By then I had had a huge amount of tests.

ME specialist said I had symptoms of ME but some over above so fell out of their criteria (they can't cure but try and help to cope etc).

Pain side of CFS/ME is generally diagnosed as Fibromyalgia which can be within a Rheumatologists expotise.

I have never come across a CFS/ME private clinic other than for children (i have a form of private insurance hence checked).

As already suggested your gp can help you with this.

Normally all sorts of tests are done (and many) before ME diagnosis, blood tests, scans etc etc. A major process of illimination.

I do hope you get somewhere hun xx

Having said that he has a genuine interest in ME and has been immensely helpful with many aspects of my health while I've been going through all this.

If I were you I'd go back to your GP and ask her to continue with your referal to whatever ME service they can offer locally, even if it does take a while, as you may well not find an alternative. You can always continue looking elsewhere in the meantime...

Good luck with it all too, it's not easy finding medical support as many here will attest, so take whatever you can get...

Not sure I can add to the advice you have already been given because sound advice, particularly from Mike.

I had a similar experience, early on, as you, became frustrated so searched the Internet.

I wrote to the Minerva Health Centre in Preston where they have ME Specialists based and shared my case with them. They gave me good advice and eventually, 6 months later, I received a letter from them for an appointment.

Now, 12 months on, I have been assessed and am attending a monthly programme.

There is a lot of work involved in the early days but it's been worth every minute; It has brought me to the understanding that no matter what your intentions, you cannot change what is going on in your body, short term. I liken it to being in a swamp.

However, in this swamp you can climb out.....but, here it comes....you do not know when you will get out ! It's hard to believe that, ironically, I have learnt so much about myself through ME.

For me, the overriding thoughts are Be Positive every day even after days of setbacks, be consistent in your approach to everything in life and plan into your life the pleasurable things you like to do...

I GET SO FRUSTRATED LIVING LIFE LIKE THIS ....but now I understand ME better !!!

I am in control of my life again and, yes, it's not what I had hoped for but am I lucky to be alive ???

Why waste your precious energy on hope because it consumes you eventually.

Get in touch with Minerva and, in the mean time make sure your doctor has done all your bloods because Minerva will ask for those before seeing you.

I heard some great news the other day on this site....that American Scientists have found a blood test that can find out what virus' we have had in our bodies throughout our lives !!! Imagine what research is going to come from that ?? Maybe they will find some common virus' within ME sufferers and find anti bodies ??

Who knows ??

I look at life differently now.

Funny, I see the little things and notice things I have been missing for years during my fast paced career and so I have to be grateful to ME for that.

By the way, I haven't given up on life, I'm just trying to find my way of dealing with it whilst it's in my life 😍

I hope you find a way forward too.

All the best to you

Jinny 💞

I found somewhere called 'the north west fatigue clinic' I have an appointment on the 24th for an assessment.

They said I can self refer, so I'm thinking of going to them for diagnosis, then figure out what I want to do treatmentwise but I may still ask my GP to refer me to an NHS specialist! Treatment at this private clinic is £65 a session and you need 6-8 sessions so it's very expensive... when I can probably find great resources online and wait for my NHS referral... whenever that may be!

Dr Tarek Gaber,

Consultant, Lancashire CFS/ME Service,

Doctor Tarek Gaber is my specialist.

Why don't you ring Minerva in Preston for some advice ?

I would recommend him.

Jinny

just a thought, if you go for private for assessment/diagnosis. Generally the quoted price is for the actual consultation and doesn't include tests. Probs a good idea to check this before booking anything and get in writing/email.

A diagnosis for ME would come after a great deal of tests and illimination of many other conditions. Worth having a good read up on somewhere like ME Association, as someone else mentioned.

Any tests/bloods/scans etc not already done may be worth you getting your gp to do first (always get results copies and take with you), as save you alot. Unfortunately it is usually getting through all the checks that consumes time pre diagnosis.

Think of your gp as the tateway to any testing needed (but on the hush of course lol).

Have you shared all your symptoms on here as be a really good insight for you with already diagnosed peeps.