Looking for private ME specialist?

Brain and nerves
1

Hi all!

Had my follow up appointment today after my blood test, everything fine (of course) and my GP said she would refer me to an ME specialist! The wait for NHS is quite long so I said I would go private.

I just received a phonecall today to say they don't have a private one they can offer me so I need to find my own, and I have no idea what I'm looking for!

I'm in Lancashire in the North West of England, just saying on the off chance if anyone is in the same area!

Nonetheless, I don't know what I'm looking for sad searching 'ME specialist lancashire' hasn't brought up much at all, just say, osteopathy clinics... but I need a diagnosis!

If anyone could let me know what I need to be looking for I would be SO greatful!

Sending happiness and light to you all smile

Ellie

2

Ellie:

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. 

3

Thanks Jackie!

I know I'm very fortunate, my nana knows how much pain I'm in and has kindly offered to fast track me to a specialist! God bless her!

I will see if I can find an infectious disease specialist, if I find one I'll just call and see if they can help! Thank you smile

4

The person I saw in Poole is one of the UK experts. Fortunately my GP sent me to him, he was a rhumatologist.

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.

5

Hi Ellie,

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

6

I have to rely on the ME clinic supplied by my local hospital, which actually consists of a general Medical Consultant who sees about one ME/CFS patient a week according to him, and the rest of the time he deals with everything from diabetes to goodness knows what...

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...

7

Hi Ellie,

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 💞

8

what do you mean you can't self refer even privately?  I sought the advice of a gynaecologist privately.  Incidentally, his treatment and advice was expensive but was far superior to that offered by the NHS.  No doubt geographical locations and specialities vary.

9

Thanks for your help everyone!

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!

10

I looked up this place and its a support group you will not see a consultant.. Google Dr Selwyn Richards, look at his website and compare with your Clinic. 

Its very unusual for a proper medical consultant to take you on as a patient unless you are referred from a GP unless it's for cosmetic surgery. The typical fee for a private consultant registered with the GMC for a first consultation is well over a hundred pounds. 

Your clinic is the place you go to once you have a confirmed diagnosis and at £65 a session it's pretty cheap for the private sector. the nurse I was referred to charged me a lot more and I felt didn't represent good value for money which was why I sotted myself out in the end.

best of luck 

11

Reading that web site here is the consultant you need to see privately. 

Dr Tarek Gaber,

Consultant, Lancashire CFS/ME Service,

12

Hi again Ellie

Doctor Tarek Gaber is my specialist.

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

I would recommend him.

Jinny

13

Hi, I think I'll do that today!

on the phone they told me the initial assessment is with an occupational therapist and a senior consultant!

It sounds good to me but I'll contact minerva in Preston too, thanks for your help smile

14

I very much doubt the consultant is present if you are only paying £65 unless its a group session. Ask them for the name of the consultant so you can check them out on the GMC register and google them to see if they have any recent research papers on CFS. Best of luck.

15

Thanks! Sorry I didn't make it clear, the first assessment for diagnosis is £120! I'll have a good look though smile

16

Hi again Ellie,

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.

17

Hi smile

Yeah I shared all my symptoms etc on here before I went to the doctors!

All I have had done from my GP is my bloods, when the results came back she said she would refer me to a specialist. I'm SO confused now with all these things to consider, I don't have the energy for this right now I don't see where the problem was in finding me a private specialist...

I'm not too sure about this clinic now, they said I could refer myself or have my gp refer me... I said if I reffered myself would they need a copy of my blood results and they said 'that would be great or we can just take your word for it that they're normal' wahhhh

I also asked what my assessment would consist of and they said maybe a timed walking assessment and they would check my heart rate and I don't recall the rest

Confusing sad

18

Hi Ellie,

It's alot to cope with when suffering.

I haven't read your symptoms (not scooped around this site much so far).

Nhs CFS/ME clinics work to a specific criteria (more reading if you can 😐). Due to budgets they stay within their criteria.

I'd be a little wary of anyone willing to diagnose just on bloods , heart rate and walking test. We all suffer differently to degrees within CFS/ME but those things certainly wouldn't cover what I experience, but I don't want to sound negative and you must do what you feel right for you.

The last thing you need is a misdiagnosis so illiminations of other possible medical stuff is so important.

Remember there is no cureent cure though, but help to cope, pace etc.. By the time I'd seen a specialist I had self taught coping strategies (help a little but not enough).

Feel free to ask any questions hun. I'm four and half years down the line and know my head was full of quetins.

x

19

Sorry but this assessment does sound right at all.  I think its very strange on the web site that they don't list who the staff are and their backgrounds and what an initial assessment involves.

if it helps here is my experience going to a recognised CFS consultant privately. First my GP did every test under the sun so  all that was left was CFS, then she referred me to the consultant. He was some distance from my home but he is a recognised expert. Using the information my GP supplied we then had quite a long consultation. It consisted of him asking me LOTS of questions about what I could do, could not do, what my life was life etc, etc  there was no walking assessment (doesn't right to me) I don't remember him doing any physical tests on me.

Finally he declared that I did have CFS, albeit not the worse kind and he send that diagnosis back to my GP and referred me to a CFS nurse who he worked with to help me learn how to manage my condition.

If I were you I would work with your GP to get every test done, that does take time to eliminate everything. Then get a referral to a consultant, once you have a confirmed diagnosis then your clinic may be worth visiting. Remember if you need to clai any benefits or need to advise work they will only consider a diagnosis from a doctor on the GMC register who is licensed to practise.

 

20

Thanks guys!

It's a lot to get my head round. The clinic did also send me a lengthy questionnaire with lifestyle questions covering a wide range of subjects!

I think I might just call my GP on Monday and tell them I need help because I don't know what I'm looking for sad I'm annoyed they didn't help me with a referral!

I'm feeling guilty about being off work too sad I just want to know what's going on asap but it's so difficult!