Royal Free 'Fatigue' clinic, London

[Uno]

That's interesting to know - cheers for posting. The Sussex M.E Clinic is the one I attend which is truely atrocious - physiotherapy consult OVER THE PHONE - no actual physio, no blood tests, no exam, only group CBT! What a waste of government money!

 

[Esther12]

That's interesting to know - cheers for posting. The Sussex M.E Clinic is the one I attend which is truely atrocious - physiotherapy consult OVER THE PHONE - no actual physio, no blood tests, no exam, only group CBT! What a waste of government money!

I've heard bad things about it too.

The one I went to before was comically bad.

It would be so great to have access to an honest and intelligent doctor who specialised in CFS and was trying to help you get better... even if there was nothing they could actually do!

 

[ukxmrv]

Jenny,

I understood that a psychologist, Dr Murphy, was the head person at the RF clinic. When I spoke with her a few years ago she wasn't carrying out testing like you described. Has the clinic changed do you know, was it Dr M that you saw?

 

[Jenny]

ukxmrv - I don't know if it's changed I haven't had any contact with it until now, and yes I saw Dr M - she's not a psychologist, but a physician.

Jenny

 

[taniaaust1]

I've been seeing my NHS CFS National Clinic neurologists on and off the last 20 years. I need them because my GP does not know what type of meds to give me otherwise i would not go as they do believe that CFS and ME is not neurological . I have to see them every 6 months. When WPI published i asked my neurologist what her view was. She with a big smirky grin said that many new finds don't pan out. She said she would be most surprised if it did. Last time i saw her she was about to retire. I wonder why?

ahh i think your post gave me a glimpse into the future... i think Wessely may soon retire too

 

[taniaaust1]

After having to cancel several appointments because I was too ill to get to the hospital, I finally got to the Royal Free ‘Fatigue’ Clinic in London.

i wonder if that hospital may be better then most of the others in England due to it having infectious CFS/ME named after it??.. eg Royal Free disease back in 1955 which closed that hospital down. i guess those who work there would be bound to be more aware of that CFS infectious outbreak and the fame its given that hospital..

 

[Jenny]

Just to update on my Royal Free experience -

Finally got an appointment with an infectious disease consultant two weeks ago after my referral letter was lost in the system - twice!

But this turned out to be a waste of time as she said (predictably) that she's not allowed to prescribe anything other than the meds to manage symptoms that I'm already on.

So I went back to the Fatigue Clinic today and had another helpful hour with Doctor M. She is very generous with her time. I wanted someone to monitor me if I start isoprinosine so she's going to refer me to an immunology consultant. She also gave me a private script for Valtrex for 6 weeks.

Jenny

 

[Vitalic]

Hi, I asked to be referred to this clinic as I'm living in London at the moment, been ill for two years and already tried CBT/GET etc. with no improvement. I just got a letter saying my referral has been intercepted so to speak, and they are assessing whether I should even be allowed to go there! I wonder if it's because I only had one appointment with the hospital I was originally sent to and never went back - they wanted to send me to support groups with other sufferers, and I was given a relaxation cd (charged 10) that included a lady telling me to "focus energy" to certain areas of my body - seriously, is this some kind of sick joke?

Anyway, I was encouraged by your appraisal of this place but it looks like I won't even get an initial consultation. One thing I was wondering, what tests should I be asking for? I had some basic tests done (although I'm not even sure exactly which) and absolutely nothing showed up, if there was even some evidence of diminished immune response or other abnormalities it would give me some confidence that this is worth pursuing, as opposed to giving up and slowly rotting away.

 

[Jenny]

Vitalic - as well as the basic blood tests they do ANA, EBV and gluten sensitivity tests. Also magnesium and Vit D if you ask for them.

They will refer you to other specialists at the Royal Free. I got referred to an infectious disease specialist, but got nowhere with that, now I'm waiting for an appointment with an immunologist.

I heard a rumour recently that they are now only taking new patients. What do they expect the 'old' patients to do I wonder.....

 

[Esther12]

I heard a rumour recently that they are now only taking new patients. What do they expect the 'old' patients to do I wonder.....

That's interesting.

Anyone with any more info on that?

 

[Vitalic]

Vitalic - as well as the basic blood tests they do ANA, EBV and gluten sensitivity tests. Also magnesium and Vit D if you ask for them.

They will refer you to other specialists at the Royal Free. I got referred to an infectious disease specialist, but got nowhere with that, now I'm waiting for an appointment with an immunologist.

I heard a rumour recently that they are now only taking new patients. What do they expect the 'old' patients to do I wonder.....

Thanks for your response. I'm still waiting to hear back about my appointment, although I do not expect anything to come out of it I would simply love to talk to a consultant that is actually up to date with the latest research etc. and will approach it from a different angle, perhaps check over my records and advise on some additional tests.

We really are pretty much screwed in the UK, it seems we can't get any of the tests that would be really useful and the NHS is a total waste of time and energy.

 

[Jenny]

Finally got the appointment with the immunologist. Nice man.

Tests show I'm severely deficient in mannose-binding lectin (MBL). Only one in 600 people have a level as low as mine. Apparently this is an inherited immune deficiency which predisposes one to infections and autoimmune diseases. Consultant didn't think it was relevant to ME though. There isn't any treatment for this condition.

Anyone know anything more about MBL deficiency?

I'm starting B12 injections (again), and amitriptyline (again). (And still doing lots of other stuff with Breakspear.) More importantly he's agreed to review me in a few months.

So it is possible to get beyond GET at a UK Fatigue Clinic!

Jenny

 

[Esther12]

Thanks for the update Jenny.

I'm tempted to try an NHS CFS clinic again, and see if they've improved. I'm currently spending some time in west sussex though, and I think the local one has a particularly bad reputation.

Strange that they don't think the MBL deficiency is related to your fatigue. I wonder if they're right, or just blagging.

Oh... did you see this post on the last page?:

I heard a rumour recently that they are now only taking new patients. What do they expect the 'old' patients to do I wonder.....

That's interesting.

Anyone with any more info on that?

 

[IntuneJune]

Immune deficiencies

Jenny, I have never heard of mannose-binding lectin. However, I do have a primary immune deficiency. Diagnosed at age 30 with fibromyalgia and CFS, I was not diagnosed with an immune deficiency until age 62. The tests are IgG (total), IgE, IgM, IgA, IgG subclasses 1,2,3, and 4.

I have been attending meetings regarding immune deficiencies and sometimes I feel I am at a fibro support group with the complaints the patients have.

While I have been treated with immunoglobulins to replace/boost my immune system, my symptoms of overwhelming fatigue and fuzzy thinking have not improved to any great extent.

June

 

[Jenny]

I didn't get the impression they were blagging Esther. But I wouldn't describe my problems as 'fatigue'. I get extreme weakness when in a bad spell, but that's reduced a lot at the moment. 'Just' dizzy, shivering, sweating, nauseous, no appetite, in pain, wired up etc.

Might be worth trying your local clinic again, if just to show them you're there!

Jenny

 

[Jenny]

I heard a rumour recently that they are now only taking new patients. What do they expect the 'old' patients to do I wonder.....

Went for my follow-up appointment last week. What's happening now is that the doc who runs the clinic (Dr Murphy) only sees new patients. Follow-up appointments are with a specialist nurse.

The nurse tried to discharge me! But after a difficult discussion she gave me another follow-up appointment in one year's time.

I guess I'm lucky to still be on the immunologist's books.

Jenny

 

[Esther12]

Went for my follow-up appointment last week. What's happening now is that the doc who runs the clinic (Dr Murphy) only sees new patients. Follow-up appointments are with a specialist nurse.

Hi Jenny. thanks for the info. Hope they're of use to you.

 

[Jenny]

Went for my follow-up appointment last week. What's happening now is that the doc who runs the clinic (Dr Murphy) only sees new patients. Follow-up appointments are with a specialist nurse.

The nurse tried to discharge me! But after a difficult discussion she gave me another follow-up appointment in one year's time.

I guess I'm lucky to still be on the immunologist's books.

Jenny

Went to this follow-up appointment a few days ago. No-one there. Was eventually told my appointment had been cancelled and I've been discharged. No-one told me! I actually had the appointment letter with me to prove I had an appointment.

I'm furious. Gonna put in a complaint.

Jenny

 

[Esther12]

Sorry to hear about that. I hope that getting there wasn't too much of a problem.

 

[Raines]

Hi,
I know this is an old thread,and I hope it is ok that I posted here instead of starting a new thread.

I am in sussex and considering going to the local ME/CFS clinic in Haywards Heath, and I'm finding it really hard to find any information on it This thread came up in my search.

As both @Esther12 and @Uno both mention being in sussex, in 2010 at least, I am wondering if you have been to the Haywards Heath clinic or know someone who has.

I really just want some first hand information. so far all I know is what my GP has told me (the offer therapy, CBT and GET) and a small amount of inofrmation I got from the Sussex and Kent ME/CFS society (''The NHS Sussex- wide CFS/ME Service based in Hayward's Heath was set up with our help in 2005 and has dealt with nearly 4,000 referrals since then. The dedicated team includes a specialist doctor, 2 physiotherapists, 3 Occupational therapist along with a psychologist and an administrator. The service is quite popular with ME/CFS patients and runs management courses in Mile Oak, Eastbourne, Hayward's Heath and occasionally Rye and Crawley.'')
But I still have found nothing from any patients who have attended the clinic.

I have tried therapy and CBT before (little to no help) and don't want GET, but feel I should give this clinic a go.

Again I hope it is ok that I posted on this thread.