Discussion in 'ME/CFS Doctors' started by Esther12, Mar 15, 2010.
Someone has asked:
I was wondering if anyone has any UK doctor recommendations?
I saw prof leslie findley in Romford, i live in hertfordshire. He is a neurologist but has the only me/cfs in patient hospital in the country as far as i know (for severly affect). He did an MRI scan on me as cognitive issues have always been the worst symptom for me. He has a very long waiting list on the NHS, you can see him privately if you can afford it, BUPA covered our fees. His secretary's phone number for more info is 01708 722829 office hours are 9.30am-12.30. He does recommend to some of his patients a neuro linguistic programme now though 1000 approx, so i stopped seeing him at that point, but he's good at tests etc if he feels anymore are necessary.
This was posted by someone else on another thread. They are the tests recommended by NICE for NHS patients. I haven't taken the list along to my GP yet to ensure I've been tested for all of this.
I've had a lot of testing and can tick off a lot of these from when I started collecting results.
My blood tests were done initially on a 3 month basis to monitor any changes but are now only done once a year or when I have an obvious problem but I do push for tests when I feel the need. I have FM / CFS so i should really look up any for FM as well.
Investigations recommended by the UK National Institute of Clinical Excellence to exclude medical causes of chronic fatigue:
Tests that should usually be done:
urinalysis for protein, blood and glucose
full blood count
urea and electrolytes
erythrocyte sedimentation rate or plasma viscosity
random blood glucose
screening blood tests for gluten sensitivity
assessment of serum ferritin levels (children and young people only).
Additional serology tests that should only be done if the history suggests the possibility of a recent infection:
chronic bacterial infections, such as borreliosis
chronic viral infections, such as HIV or hepatitis B or C
acute viral infections, such as infectious mononucleosis (use heterophile antibody tests)
latent infections, such as toxoplasmosis, Epstein-Barr virus or cytomegalovirus.
Myhill does 30 minute phone consults for 70! & obviously you have to pay for tests. So best to get anything covered that you can on the NHS first (get cvopies of the results) then go to her for more specialised testing.
Thanks very much, coxy and Diva55.
Prof. Findley is one of those names in the CFS field that's familiar to me, I'll look into him some more and give his secretary a ring. No harm in at least getting an NHS referral, even if I decide against seeing him in the end. coxy, do you know what this expensive NLP prog that Prof. Findlay recommends is? No probs if not, his secretary will prob know.
Diva55, I didn't know Myhill does phone consultations, that's useful info, thanks. I'll take along the NICE list to my GP and see what I've had done and try to get tests done through him. I'm not aware of having had most of the tests. One thing I notice is that they mention 'chronic bacterial illness, such as borreliosis'. This is chronic Lyme Disease, and I wasn't aware that NICE even accepted that this as a possible diagnosis.
If anyone has any further doctor/medical practitioner suggestions, or any other lists of tests that I should make sure I've had done, they'd be much appreciated.
One place I've just started looking into is the Breakspear Hospital. I think it's pricey. There's a rhumatologist there, Dr Terence Daymond, who has an interest in CFS/ME and Lyme. I think Dr Jean Monroe there also has this interest. The hospital is one of the few places in the UK that provides intravenous antibiotics for chronic Lyme, which is why I started looking into them. If anyone has any experience or opinion on this place or these docs, I'd be very interested to hear it.
Thanks very much.
I was thinking of getting LDN thro Myhill ( I got it through the NHS in the end) & rang her office to enquire. They sent out a questionnaire & then told me about the phone consults. So be prepared for questionnaire.
I had a Lyme Disease test done on the NHS. Although my doctor did go out on a limb for it. He had to ring a friend in the London School of Tropical Medicine to get information!
But I was told by some Lyme people that the NHS test wasn't reliable & often gave false negatives. I didn't really follow this up.
These are what were marked on the test: - don't know if they mean anything to you?
Borrelia C6 (peptide) EIA
B. Burrgdorferi IgG immunoblot
Good luck with your tests / doctor search.
I'm a Breakspear patient. I see Terry Daymond. I was diagnosed with Lyme and co-infections there. I've had 12 weeks IV abx and nearly 3 years of different combos of orals. Also artesunate. But I'm no better.
I asked him for LDN a few weeks ago and have just started it.
If you want my views on the Breakspear, just PM me.
Thanks for the info.
Diva55, the Lyme Disease tests you mention are the two tests the NHS does for LD: the ELISA and Western Blot. Not sure what these words mean, though! I've also heard that the tests aren't very good, giving false -ves (and false +ves). I think I read a virology blog recently that said one reason it's hard to test for LD is that the borrelia (the LD bugs) can hang out in organs and be of a low concentration in the blood, so there's sometimes not much borrelia in the blood that they test. I don't know. I was aware that NICE recognised LD, but not that they recognised it could be a chronic infection. Perhaps they think that this can happen only if it is not treated early? I don't think they accept it as a diagnosis if it is caught early and treated with a short course of antibiotics, but symptoms persist/begin later. I don't know, I keep meaning to look up the NICE guidelines on LD.
I took LDN for a couple of months, no change in symptoms. I got it privately, didn't even think of asking my GP about it.
Thanks a lot for your reply, Jenny, I'll PM you.
I wish I could offer something positive....
....but all I can say is that you need a good physician who can do all the standard tests to do the process of elimination (as per NICE guidelines), then when all this is negative, you have ME.
Then, with nothing left to offer, you get pointed at bollocks like NLP, Lightning process etc.
At this point, you keep your money in your pocket and save your energy and work out some coping strategies for yourself......you will be a far better physician than any of the quacks out there at this point.
I hope this does help a little, even if it appears negative. And I have to say that I am lucky that I don't need medical help to save my life on a daily basis, so if you do, then obvioulsly you need a doc, they are quie good at acute, emergency type stuff.
I haven't seen Terry damond but I did see Jean Monroe.
I was unimpressed. Her face said she clearly hadn't met anyone quite like me or really know what to do with me but that didn't stop her giving me a huge list of suggested tests. I was given time to think it over, but felt their treatment approach wouldn't be one that worked for me.
The Roller in the car park, complete with private number plate natch, also fueled my cynicism.
OTOH the person who recommended them to me had various positive stories to tell, including believing that JM may well have saved her daughter's life.
Good Luck whatever you choose!
FWIW my DH has a friend who is a rheumy. Not generally known for his searing intellect or being off mssg with the NHS he personally considers chronic Lyme to be very serious and very difficult to shift.
Thanks again for the useful responses.
fingers, you may well be right about it being best not to see anyone for anything more than the NICE tests. Don't worry about sounding negative; the situation isn't exactly rosy for CFS/ME/LD sufferers..! I've tried a lot of treatments for CFS/ME/LD, and pretty much the only things that have seemed to help are my own coping stratagies. Some of my well-meaning loved ones can't understand why I don't consult more 'specialists', and I find it difficult to explain my decisions to them. I'm going to go to my GP with the NICE list and Myhill's list, and take it from there.
willow, thanks for your views and the info on the Breakspear and Lyme. That's very interesting the rhumey you know is concerned about chronic Lyme, I'm going to have to read the NICE guildelines on this ara.
Any other recommendations, views or lists of tests would be most welcome.
As well as Dr Myhill there is dr charles forsyth and I just found out another doctor I use who does the mito profile has closed down. What is going on.
here is a link to some practitioners of eco based medicine,
sorry i've only just seen your question Esther12 about Prof findley. The answer is i'm afraid his version of phil parkers Lightning Process, so be careful. He charges about 1000 for 3 days (maybe even more now). You may of read my recent posts about my under taking of the LP, although it has helped me with my cognitive symptoms, it certainly wasn't a cure, i could of been helped just as much by having some free NHS therapy i imagine
I go to Breakspear but it sounds like you may already have your info, if you need any info PM me although I will be offline from tomorow am fopr about a week
Any UK NHS ME friendly consultants
:Sign Help: Hi all been trying to find an ME friendly nhs consultant for some time now . apparently consultants my way are not sympathetic and my GP is at a loss where to send me . He doesnt want me to be patronised again like i was when i went to see a rhumatologist at the beginning of all this .
i have asked to be referred to a nuerologist as i am clearly showing nurological signs. poor memory, poor concentration, word finding , muscle twitching ,extremely poor balance , dizziness, numbness, etc etc you get the picture .
basically my GP is willing to send me anywhere in the UK and i would travel wherever by whatever means to get a doc who would take this seriously and run appropriate tests . things are getting worse and i am getting no help whatsoever .painkillers and anti inflamatories big wow .
i cannot afford to go private and the state my health authority is in they would not agree to funding .
so if anyone has any ideas id be very grateful thanks in advance
Been to my gp this morning .he is refferring me to a nuerologist ...... he had also been reading up on xmrv he spoke about the london study so i put him right on that one lol .At least hes trying and taking an interest . told him off the record that im in the uk study for xmrv .he seemed genuine when he agreed id done the right thing . what i will do if im negative though god knows ? he was also aware of all the diff definitions he mentioned oxford and agreed it was a joke . he also said he had no doubt i would meet the canadian criteria. just hope now the nuerologist i see knows about ME and doesnt think im a basket case :worried:
Sounds like you've got a great GP! I'd like one like him.
Good Luck with the neuro. I went to the national hospital for neurology and neurosurgery. The young and overseas staff were great, couldn't help me personally but they were kind, interested and concerned for me.... Just said there were some things medicine hadn't yet got a handle on. avoid the bow tie wearers!
A couple of decent neurologists would include
1. Dr Chaudhuri (who could possibly be seen through this hospital but you need to check)
Abhijit Chaudhuri, formerly of the Western General Hospital in Glasgow, who is now involved closely with the ME/CFS service at the Queen's Hospital, Romford, Essex, which is home to the UK's only inpatient service for people with ME/CFS, (this blub is taken from MEA webspage)
2. Dr Russell Lane
I know that your health authority will not fiance anyone out of your area. My advice would be to investigate prior to the appointment to see if they one they suggest is any good. If not, challange your PCT. Write to them and use the complaints/requests proceedure to be seen out of your area.
My experience is that most neurologists I have seen do not accept that ME is a neurological disease and will not investigate properly
Dr Chaudhuri was the neurologist who did the autopsy on Sophia Mirza and gave the cause of death as ME. HE said that 70% of her spinal cord showed signs of disease. He also challenges the establishment on the warped and corrupt practices around ME. However the above link in Essex looks like a disaster Zone to me. I know he works in Essex privately. Here is a link to him there are more on google.
As far as your health authority goes you are entitled BY LAW to be seen anywhere in the country. You could always write to PALS. Google them.
Doctors in Uk
I currently live in the Uk, we are posted here from Canada. I find the medical system difficult to navigate here. I have seen a gp who was supposed to have me referred to a ME specialist. I waited 6 months and while at my appointment for some bloodwork asked the nurse if she new who I was to see (as the doctor would not tell me) and she said she would check. When she checked she found there was no referral done. I have now been waiting 3 months more and still have not heard about my referral even after calling to make sure one was done properly this time. They still will not give me the doctors name. I don't want to waste time on a doctor who will not help. I like to research who I am seeing and if they are not going to be helpful, I don't want to waste my precious energy. I move back to Canada a year from now and am resigned that while living here I won't get into a specialist either for my endometriosis or ME. I have been here 3 years.
I have pretty much decided to ask my old doctor in Canada for a referral to one of the best specialist in Canada when I return. The system here is just too difficult to navigate. I just finished the GP survey, it was pretty dismal when finished.
Good luck with your search, I really wish you success and I wish while here I could have found someone to suggest for you.
thanks for the replies everyone . someone suggested Dr Chaudhuri to me on facebook infact ill be honest hes the only name that has been suggested to me how sad is that . does that mean he is the only doc in the entire of the uk worth seeing cause if thats the case thats pretty dismal and things are worse than i thought .
im up in yorkshire so i think my chances of getting to see him are probably odds of pretty slim to none
but i will tey my damndest to get to see hi if i can . though the travelling would probably kill me anyone got a floor i could kip on lol
it might be an idea to keep this thread going a bit . im sure there are other folk in need of a good doc even a good GP .
there must be more than Dr Chaudhuri out there surely ?
You can also try a Google Site Search
Separate names with a comma.