ME/CFS Doctors/Clinics in UK

[Ellie_Finesse]

I was wondering if anyone knows of any good Doctors/Clinics in the UK?

I have found one on thr NHS in Essex (clinical lead is a Neurologist) that states they wont give any Pschological reasons for the condition. Ideally I would like to know of NHS Doctors/Clinics but it would be good to know of Private ones too, just in case I can raise the funds to pay.

I am with Benendon and was disappointed to find on their website, that they dont have any Specialists in ME/CFS at their hospitals. Once the Neurologists report comes through I am going to ring and ask whether they would pay for me to see someone that isnt at one of their hospitals.

Thank you all in advance

 

[Esther12]

This was from the NHS Essex service (now edited to present it as being a personal correspondence):

http://www.bmj.com/content/329/7472/928/rr/702549

This is the non-apology apology:

http://www.meassociation.org.uk/201...-to-consider-wider-implications-20-june-2014/

There was some talk of some investigation... not sure what ever come of that. Almost certainly nothing.

If that's that place you were considering, I would not trust them.

Unfortunately the reason there's so much quackery around ME/CFS is that there's normally not a lot that can be done. Getting checked for alternative diagnosis is the most valuable thing to be done.

 

[ukxmrv]

You are about 10 years too late to find a good ME doctor in the UK using up to date methods. I think that the only vaugly experimental doctor left is Dr Myhill and she seems to be only able to help some patients.

I am not even sure if she is taking on new patients now.

My advice would be to use your private insurance to get things like a tilt table test and any immune system and other tests you can. If you can I would also see an Endocrine Specialist but not mention ME to any of them.

Other alternatives would be to go abroad or see someone like Dr Enlander who comes to the UK

There are few NHS clinics that offer anything than CBT, pacing or graded exercise.

Personally I would see Dr Bansal in Surrey or Dr Murphy at the Royal Free but only because I have met them and have private test's and treatments to talk about.

 

[Ellie_Finesse]

Hi @Esther12

Thank you for the information above, I think I have seen that before as it seems familiar.

Its not the same place as the one I have been looking at. The Clinic is in Romford, Essex and is run by Dr Chaudhuri a consultant neurologist. Unfortunately there is about a 9mth waiting list

 

[sarah darwins]

The Clinic is in Romford, Essex and is run by Dr Chaudhuri a consultant neurologist.

He may well be worth seeing. Why not get your name down, regardless. This from an item on the TYMES Trust website:

Dr Chaudhuri is outspoken on his belief that ME and CFS should be
separated: 'Unless neurologists start to take an interest, and segregate
ME out from the rest of chronic fatigue patients, it will be very hard to
try and develop our understanding, research, or talk about new
treatments…' - http://www.tymestrust.org/txt/alert201303endofthecrosspartygroup.txt

.. to which I imagine most people here would say "hear, hear".

 

[*GG*]

Go to KDM in Brussels?

GG

 

[Ellie_Finesse]

Thank you @ukxmrv

I had a look at Dr Myhills website and it said she wasnt taking on any more patients

Am gutted, I feel like I am looking for something that isnt there. All I keep doing is hitting a brick wall, the whole system stinks! I have no idea what I am expecting except to be better.

Am fed up of Doctors looking at me ina way that makes you want to squirm or telling you, 'I understand how you feel' ermmmmm ....... No you dont! Its almost like you know what their thinking, especially when another test result comes back normal. I was actually relieved to find 1 come back as low folate levels....

To top it all off, I find out today that my neurologists letter seems to have got lost in the system. Grrrrrrr

Sorry for the rant guys, have just really had enough and I am no where near having it as bad as some of you guys.... I know I should stop feeling sorry for myself and suck it up....but I just cant help it at the mo!

 

[Ellie_Finesse]

Thank you @sarah darwins, I think I will

Thank you @ggingues I just dint have the money. Even if I had the money there is no way I can go for personal reasons. But thank you for the advice

 

[sarah darwins]

Sorry for the rant guys

Nothing to apologise for: the standard NHS protocols for "chronic fatigue" should carry a warning label: "May cause extreme frustration and the need to rant. If symptom persists, don't see your doctor."

Before finding that quote from Dr. Chaudhuri, which strongly suggests he's one of the good guys, I was looking at your Essex CFS Service website (Dr. Chaudhuri appears to be mercifully unconnected). Their FAQ section is good for a laugh (or a cry, depending). My favourite was:

Why do I feel better when I go on holiday?

 

[Mark]

I'd add Julia Newton to the suggestions of Bansal and Chaudhuri...these are the best bets that I know of in the UK, and from what I've heard it's likely to be a wait of getting on for a year or so for any of them.

 

[Research 1st]

RE: Seeing Dr Chaudhuri at Queen's Hospital Romford:

A small correction for people who think you can see Dr. Chaudhuri on the NHS for ME, sadly you cannot 'officially'.

BUT, the good news is you can, if you see him for a neurological referral. (Yes, the irony...). So that can be done via the NHS and your consultant (if you have one). A letter or phone call would do.

If you want to see Dr. Chaudhuri you have to bypass the CFS/ME block from Essex Trust, that's the only way to get your foot in the door and to stop the Fatigue experts grabbing you.

As an inpatient, I wouldn't go within miles of the place, but as an outpatient you're safe as long as you see Dr C, and not the others, who are delluded and believe they can alter your disease with CBT.

Simon posted this research update from America. The difference is about 30 years in knowledge base, compared to the NHS: Link below....

http://forums.phoenixrising.me/index.php?threads/stanford-2015-spring-newsletter.38011/#post-606085

At the end of the day, without pathogen discovery, we're all screwed.

The compromise will be to make subsets of CFS 'autoimmune'. This is slowly happening.

Maybe in 5 years, the system of 'managing' ME (via CFS) will be a bit less corrupt. So there is some hope.


Edit: Mark's good mention of Julia Newton in Newcastle (At the RVI Hospital).

This is 'OK' to ask for a referral if you have POTS or think you might have and need a proper 'TILT Test'.

That doesn't need to be negative sounding, Dr Newton think at least 1 in 4 people with ME or CFS have POTS. I'd argue if you have severe ME, then by the nature of that, you're bound to have Orthostatic Intolerance and thus probably have a tachycardia or BP abnormality on TILT. Even if you 'just' get a diagnosis of VasoVagal Syncope or Postural Hypotension (or Hypertension), that's better than nothing in the current climate of universal head scratching and passing the buck.

She doesn't see ME patients for what the NHS call 'ME' though. Important to remember if travelling all the way there thinking she is an 'ME doctor', at an 'ME' clinic.

As everyone knows, there is no ME clinic in the UK. Not one.

Dr Newton isn't an ME doctor, or researcher. She's a Fatigue researcher, and knows about autonomic dysfunction relating to Fatigue, primarily. Ergo, other than going to the Royal Free (London) or Dr Bansal (London outskirts) you won't find an ME doctor on the NHS who deals with the immune system - what 'controls' ME patients, via it's link to the CNS.

Newcastle sees ME patients yes, but not at the Syncope Clinic (Dr Newton's domain). So unless you've got POTS, I doubt you'd get into a 'fainting' (syncope) clinic, or in POTS patients case, pre-syncope.

All new 'CFS' referrals' in Newcastle come by the immunolgy department (wait for it).....who'll test for conditions you don't have, tell you you have CFS, thus don't need to see an immunologist. (Long pause).....

So if you have undiagnosed POTS, I agree with Mark's suggestion of asking to see Dr Newton (NHS Choose and Book), or if you live down south go to see Chris Mathia's at St Mary's London (they have an autonomic unit), but don't tell him you have ME or he'll believe you have deconditioning POTS and you'll be back to square one, with CBT and psychiatry.

Another alternative is to go to the Breakspear and ask to see Dr Peter Julu. He has some fancy machines to measure autonomic function, and I believe, you might be able to see him in Harley Street, central London, as well.

http://breakspearmedical.com/about-us/our-people/

Also I see Dr Puri is on their books at the Breakspear. He's done multiple ME brain scan studies, is extremely intelligent and very empathic. What any of these people can 'do' for you, ultimately, is another matter. The research is simply not there to create a mainline drug therapy at the moment, and so treatments are lagging behind the level of disability patients have, and the now huge numbers of people given a diagnosis of CFS, correctly or otherwise.

All in all, 3 years wait, and the publication of the Norwegian Rituximab 'CFS' paper, can't come fast enough for all of us!!!

The 2015 NHS health care provision for ME or POTS is like visiting communist Russia in 1985, asking about Occulus Rift. Quizzical looks all round.

 

[Ellie_Finesse]

Thank you @Mark and @Research 1st

A small correction for people who think you can see Dr. Chaudhuri on the NHS for ME, sadly you cannot 'officially'.

BUT, the good news is you can, if you see him for a neurological referral. (Yes, the irony...). So that can be done via the NHS and your consultant (if you have one). A letter or phone call would do.

Just to add to that, I spoke with the Secretary of Dr Chaudhuri today and asked about paying private for a consultation initially then going on NHS waiting list. She said that he no longer sees private patients for that clinic and if I wish to be referred, my GP will have to write a letter because if they get referral any other way ie: Patient Choice done through internet, he will not see you. He will happily see patients if its done through sending a letter. Because waiting lists are so long, he maybe able to see patients where urgent referral was requested. I was told to make my GP aware if this because they will automatically do referral through patient choice.

Did you or someone you know see Dr Chaudhuri? I would love to know from anyone how he has helped them and so I know what to expect.

I will take a look at the link you provided, thx

 

[msf]

Pure heresy from Chaudhuri there with the comment about seperating out ME and Chronic Fatigue patients - what's he trying to do, demystify the whole area? For what? So that doctors have to treat these patients? This man is a dangerous radical, and has to be stopped.

 

[Ellie_Finesse]

Before finding that quote from Dr. Chaudhuri, which strongly suggests he's one of the good guys, I was looking at your Essex CFS Service website (Dr. Chaudhuri appears to be mercifully unconnected). Their FAQ section is good for a laugh (or a cry, depending). My favourite was: Why do I feel better when I go on holiday?

Hmmmm.... I dont know how to respond to that lol what a bizarre question!!

 

[msf]

I know the answer to that one: because I am safe from the negligent practices of the NHS.

 

[sarah darwins]

Hmmmm.... I dont know how to respond to that lol what a bizarre question!!

Re: Why do I feel better when I go on holiday?

I suspect for many people with ME the answer would be: what's a holiday? For the rest it would be: I don't.

 

[Valentijn]

I'd add Julia Newton to the suggestions of Bansal and Chaudhuri...these are the best bets that I know of in the UK, and from what I've heard it's likely to be a wait of getting on for a year or so for any of them.

I think she'd be excellent for OI diagnosis, but some ME patients have reported that her recommendations for treatment of it involved exercise and didn't really show an understanding of ME or PEM. I think she's likely to eventually evolve in her understanding of ME, with the line of research she's doing, but I wouldn't be sure that she's there yet.

 

[Countrygirl]

Why do I feel better when I go on holiday?
Often, for patients with CFS, when they go on holiday the increased relaxation and being away from daily stressors has a beneficial influence on their CFS symptoms. However, a holiday can also increase stress levels and have a negative impact on symptoms due to the disruption to routine as well as the journey and the preparation required. Being prepared for the latter, taking pre-emptive rest and breaking up the journey can encourage a more enjoyable holiday.

I have just read through their blurb for patients................do you laugh or cry? The staff clearly have dangerous delusional beliefs and are a threat to the well-being of their patients................(isn't that grounds for sectioning? )

However, the above question in quotes is not as draft as it sounds..............(the answer provided above is though and just illustrates the clinics ignorance of the subject yet again.)

Just to give two examples: when I was confined to bed and very sick a bed was made for me in the back of a car and I was taken to the cliff tops over Sidmouth where the air blows directly off the sea. The change in my health was immediate and I could get up and walk along the cliffs for a very short distance. I was absolutely bewildered by this resurrection at the time. The horrid symptom of feeling poisoned disappeared too.When I was returned to Bristol I immediately became very sick again and couldn't manage two steps outside the front door. This taught me how much our environment contributes to our illness.

Also another friend of mine from N. Devon who has ME severely was flown out to the Negev desert to stay with her doctor-brother. She became so well while there that she considered herself recovered.She spoke to her brother's neighbour, another doctor, about it and he said he believed her recovery was due to the fact that they have no pollution or toxic chemicals there. However, when she returned to London, she immediately became very sick (literally too) and the ME became severe again.

I also remember seeing an advert many years ago for people with the illness to join an ME community in the Canary Isles as the environment/climate led to an overall improvement in their health.

So going on holiday can improve your health........providing it is dry and pollution free. Nothing to do with a reduction of stress as the chumps in the clinic claim.

 

[Sidereal]

So going on holiday can improve your health........providing it is dry and pollution free. Nothing to do with a reduction of stress as the chumps in the clinic claim.

Totally agree @Countrygirl, great post. Getting away from nasty moldy homes in these isles no doubt helps a lot.

 

[Ellie_Finesse]

I will come back to this thread later when I am in a better frame of mind.... I will explain in another thread in members area as I really need to rant and get it off my chest if thats ok.

Thsnk you all for the advice!