UK: University College London hospitals (NHS)

Strongly depends on what your symptoms are and the events that led to your illness.

Let's say you have prominent cognitive/sensory impairments that were not life-long and started at a definite point of time. Then you may want to first start with a neuroscientist specilaising in brain trauma to rule it out - if a lot of symptoms match.

It's important to try and select the right kind of neurologist according to your own experiences as they specialise within their specific areas.

For example, the first general referral ANS neurologist I saw only investigated visible damage but there is also subtle non-visible damage/disturbance that a brain injury doctor should be more inclined to investigate.

 

Ah ok, thanks for this - that actually doesn't sound like me so much. My symptoms seemed to start out as just physical, and with a gradual onset.

 

Mine started after an acute viral infection, so I'm aware of the definite time. After infection recovery, my immediate notable symptoms were cognitive, and then additional symptoms, including physical ones, occurred gradually. I'm now booked in for neuropsychological testing to assess my brain.

 

Oh wow, I hope you get some useful info / results. Is the testing you're booked in for at UCLH?

 

Just picking up the conversation re: UCLH again,

I have an appoint there on 10th March, so I want to "prepare" a little bit.
My main reason for the appt is to try to get a diagnosis as I still don't actually have one.
It looks like since we last spoke about UCLH clinic here, they've added ME to their name, which might be a very very small good sign..?
https://www.uclh.nhs.uk/our-service...nic-fatigue-syndrome-and-fibromyalgia-service

Website doesn't seem to say who any of the actual team are so I can't do any sleuthing to try to see how BPS leaning the vibe will be, but from previous conversations here I'm expecting it to be quite BPS, so trying to steel myself to politely shut that chat down whenever it seems like it's happening..

I'm also wondering, given the points raised by @livinglighter about neurology vs ME/CFS at UCL in particular, and given that I have a few symptoms that seem less like ME/CFS and that might be something neurological (though obviously I have no idea, but the symptoms are the simultaneous onset strange smell, earache and intermittent tinnitus), if I need to make a bit of a plan about which symptoms I "prioritise" talking about.
Tbh I have quite a long list of symptoms overall and I'd really like to communicate ALL of them to one person, but that often seems weirdly difficult / not what the system is designed for.

Anyone had any recent experience at this clinic?

Edit: patient leaflet here - https://www.uclh.nhs.uk/patients-an...nic-fatigue-syndrome-and-fibromyalgia-service

 

You can ask your GP to request the clinic’s full policy, including its approach to ME/CFS. You may be able to gauge better what’s happening since the new guideline publication.

 

It used to be run by Saul Berkovitz who is a nice conscientious guy but I think the department as a whole had a fairly 'multidisciplinary' feel. It used to be the Homeopathic Hospital and some things didn't seem to change that much.

Saul is quite likely still there and is a fully trained neurologist as well.

 

Hmm, update, my appoint at the UCLH (Royal London Hopsital For Integrated Medicine), has just been brought forward by about a month, it's now early next week.
And it's with this guy - https://www.unssc.org/about-unssc/speakers-and-collaborators/dr-peter-gruenewald
https://yestolife.org.uk/provider/gruenewald-peter-dr/

Have to be honest - reading those two pages has made me a little nervous...!

 

That does not look at all promising. The royal London Homeopathic Hospital was supposed to have been brought under reliable evidence-based medicine when it changed its name in 2007. Looking at the website for its history and the current staffing and services it looks clear that this never happened. It remained a quack alternative medicine centre.

It looks as if in some ways the situation is now worse than it was before because in the old days the Homeopathic Hospital was recognised as being there to provide alternative treatments. Now it is pretending to be part of the routine service. there is absolutely no reason why a standard service like diagnosis and management of ME and related conditions should be provided by a unit that openly denies the need for reliable-evidence based treatment.

Maybe the simplest thing if you attend is to ask for assurance that whatever is offered is in line with NICE Guidelines and ask to be shown where that is written.

If you don't get satisfaction you would be entitled to complain to your GP that you did not think it was appropriate to be referred to a doctor who advocates homeopathy and does not use NICE guidelines and that you have a right to be referred to a proper medical service. You can quote my name - Jonathan Edwards, Professor of Medicine at UCLH.

The whole thing is a mess. Until there is a government that takes health care seriously it is going to stay like that not just for ME but for everything, sadly.

 

Maybe stay focused on getting a diagnosis and politely decline any dubious proposals for treatment.

 

What is the benefit of getting a formal diagnosis which outweighs the time and energy expense of consulting a practitioner who believes in arrant woo? I know you have some tough battles on the go with the DWP, @josepdelafuente, so if a consultant’s letter outweighs a GP’s summary of your disabilities (which in theory, it shouldn’t) then needs must. But if you’re keen to get a diagnosis in order to relieve uncertainty about your condition, then surely it’s only worth seeing a doctor who eschews mysticism and whose opinion you can take seriously.

 

Hi both, thanks so much for your replies, honestly so reassuring to be in communication with some sensible and sensitive people!

Yes, this seems like the way to go (if I do go), though it's unclear whether this guy is really qualified to make a diagnosis!

Thanks for this - I'll definitely keep this in mind and in my back pocket as it were, much appreciated.

Yes, these are good points and get right to the heart of it.
I think I have two reasons for wanting a diagnosis, the two main reasons are:
1) so I can take part in DecodeMe,

and 2) to see if I can be examined / investigated by someone (one of those rare unicorns) who does somewhat know what they're talking about biomedically, and might be able to properly rule out some of the things that in theory should all be ruled out in a differential diagnosis. As far as I can tell, so far I haven't really been seen by anyone who knows anything at all about ME...
I'm aware we've had various conversations on the forum about the circular Catch-22 nature of that particular problem - there not really being a specialization / a system that enables the hypothetical full differential diagnosis procedure to actually ever happen (as far as I can tell).

Regarding DecodeME, I suppose if the medical professional who made the formal diagnosis were a practitioner of arrant woo, their diagnosis wouldn't necessarily be any more reliable than my self-diagnosis, but it still feels it's important for me personally to respect the design of the study and not decide to tick the diagnosis box because I believe my self-diagnosis to be better than the only professional I've managed get an appointment with, and who happens to be ill-informed... if that makes sense!
I suppose partly because it highlights (as if more highlighting is necessary) the complete unfit-for-purposeness of the NHS on ME at the moment.

Regarding the DWP, thanks for your thought on that @Shadrach Loom , as it turns out - having a confirmed formal diagnosis from a medical professional that I specifically have ME doesn't actually seem to make much difference one way or the either.
I have piles of documentation and letters from medical professionals confirming that I'm definitely very ill, and a diagnosis is pending, and the DWP seem satisfied with that without waiting for a specific confirmed diagnosis to make their decisions.
They fully agree that I'm ill, it's just how that illness translates to an amount of money where our views differ!

As you mention, it's more the awareness that while my self-diagnosis may well be better informed than someone with an MBA in Positivity & Leadership (for example), it's probably still less well informed than a (good) ME specialist... Not that I'm expecting any revelations, I just don't like to leave stones unturned generally!

So yes in conclusion, I'm feeling very 50/50 about if the appointment will be worth my time & energy or not.

 

The final paragraph of the internet history of the RL Hosp. Integ. Med. says:

The thread running through the highs and lows of the last 160 years is not great names, nor even the contribution to the art and science of homeopathy or integrated medicine. The ideal that has sustained the Royal London Hospital for Integrated Medicine is a commitment to making available the best that an integrated approach to medicine can offer to help those who need it, when they need it, regardless of ability to pay.

So they aren't interested in evidence or science. Just providing the magic they like to provide. The 'best' of zilch is presumably zilch.

 

It also just seems comically bizarre that I'll be seen by someone who runs leadership courses for the UN...?! What on earth is going on..

 

I’ve come across a fair few graduates of Said Business School in the zones where academics earn grown-up consulting fees. Some were cleverer than others. Every single one was 100% coin-operated and appeared entirely free from scruples.

 

On point 1, Decode ME - well, noble cause and all that, very much worth socialising where one can, but it’s not going to tell you anything specific to yourself, and a single additional participant isn’t worth a pWME consulting a pretend pointy-hatted magician for.

I just missed out on qualifying for Decode ME, likely because I was briefly subject to an adrenal insufficiency diagnosis in the period when I filled out the form, and it didn’t occur to me to harass @Andy to get a second go, just to increase the sample size by one.

 

Goodness... What on earth is "Mistletoe Therapy! is one offered a bunch to kiss under? Better take your partner with you @josepdelafuente

 

Well I don't have one so hopefully the good doctor will oblige..!

 

@josepdelafuente I guess wanting to participate in decode ME is making you want to get a ME/CFS diagnosis right now, but if you have symptoms that might reflect something else that you need addressing and could be neurological, then why not request a neurological workup first? A neurologist, especially those at UCLH, might not consider investigating or even permitting access to clinics just because of what they refer to as a CFS diagnosis. ME is so poorly understood it seems like they do not think it exists.