Top 3 Investigatory CFS/ME specialists in the UK?

[Fogbuster]

Yeah, usually the case. An antileukotriene like montelukast can be thrown in too, as that's another mast cell mediator.

I vish there vas a save function...

 

[CFSTheBear]

Was that with ref to who I saw @jstash?

That's a real shame if so, sorry to hear it. I know his workload has gone up massively recently and he lost his registrar. Who knows what other political pressures have come about from treating 'controversial' patients like us, I guess it all adds up. He made it very clear to me he that he would be coordinating the efforts of the other consultants he referred me to and has done so to date, but perhaps he can no longer sustain that

My opinion of them is of course very high because their treatments improved my quality of life so much. I think that even it hadn't been effective, I'd still have a higher regard for them for the simple fact I actually got some proper investigations performed after 20 years of being sick.

Last time I saw him was...3 months ago I think, first appt maybe around June? I don't want to necessarily go into detail as I think people can often see a bad review similar to TripAdvisor and then make an instant judgment call.

I would def agree that initial investigation was thorough - but for me it basically stopped at "you have POTS". Now, that's definitely further than any NHS doctor so far, but definitely removed from your experience (which I'm glad has been good!).

Like you say - sometimes the willingness to even investigate is very good, and that's what matters. I'm glad you had such a good experience, and wish mine could've been that comprehensive.

 

[ryan31337]

I would def agree that initial investigation was thorough - but for me it basically stopped at "you have POTS". Now, that's definitely further than any NHS doctor so far, but definitely removed from your experience (which I'm glad has been good!).

I'm really sorry to hear that - did you not at least get offered something like Midodrine or Ivabradine?

Aside from Ivabradine, the biggest benefit to me was the referral to his endocrinology colleague. He hit the nail on the head with a specific and very disabling issue I had that no one else had recognised (reactive hypoglycemia), but also because he is very open minded and immediately signposted a couple of other issues too. Alas, as I understand it he was 'shutdown' shortly after and told he could only see clear endocrine abnormalities in his NHS clinics... seems to be the way it goes when you try to help someone!

 

[CFSTheBear]

@ryan31337 Ah - that's a shame I definitely suffer from the same! Sounds like one of the good ones.

Yup - was offered both those, decided to try other means first but have been meaning to revisit, not sure which one would suit me best at the moment. Also having difficult working out where my OI ends and ME begins, and how much a POTS drug would even help me in that regard, if that makes sense.

 

[Fogbuster]

@ryan31337
I hope you don't mind me asking the name of your OI doctor. I see Dr Bansal and am prescribed acyclovir.

But in many ways the OI has become the most troublesome symptom and the cardiologist I saw wasn't a help although I found him from the POTS website.

He has however diagnosed mitral regurgitation which has become severe so I need surgery. It makes it a little difficult to know if the OI is purely ME or a mix. The surgery will be major which is not a happy thought but hopefully, symptoms will then improve.


@Fogbuster apologies for disrupting your thread. Please ask if you need any info re Dr Bansal.

No problem at all. Thanks for the Dr Bansal recommendation. I've found an article on his recent developments, which is enough for me to get an incite into how he operates. http://www.richmondandkingstonmegroup.org.uk/news/old-news/agm-talk-dr-amolak-bansal-r/

Do you think he would be welcoming of my case? Whereby I clearly seem to have some form of immune dysfunction, based on my symptoms and the drugs/supplements I respond to. But in the standard full blood tests for my immune system I had a few years ago on the NHS, nothing unusual was detected. Does he do any other immune tests or lines of investigation that you wouldn't get through the NHS?

I'm sorry to hear about your heart issues. Best of luck with the surgery

 

[ryan31337]

Yup - was offered both those, decided to try other means first but have been meaning to revisit, not sure which one would suit me best at the moment. Also having difficult working out where my OI ends and ME begins, and how much a POTS drug would even help me in that regard, if that makes sense.

I really know what you mean. For so many years pretty much of my ills were put down to 'just ME/CFS' but after a LOT of reading here and much persistence I've been able to divide and conquer a good chunk of symptoms away. Have I got to the root of the problem and cured PEM? Absolutely not, but I have improved QOL a great deal by treating definable issues that plagued me alongside.

That's why I bang on so much about POTS/OI, a great many of us have it without realising - I certainly didn't for the first 20 years of illness. Yet its impact is far reaching and treating it can make a massive change in our QOL. I was very glad to see that some of the comments, even from the more shadier orgs, in the recent CFS NICE guideline review drew reference to the importance of isolating OI in CFS patients - hopefully a step forward.

 

[Fogbuster]

I'm really sorry to hear that - did you not at least get offered something like Midodrine or Ivabradine?

Aside from Ivabradine, the biggest benefit to me was the referral to his endocrinology colleague. He hit the nail on the head with a specific and very disabling issue I had that no one else had recognised (reactive hypoglycemia), but also because he is very open minded and immediately signposted a couple of other issues too. Alas, as I understand it he was 'shutdown' shortly after and told he could only see clear endocrine abnormalities in his NHS clinics... seems to be the way it goes when you try to help someone!

I suspect that I may have reactive hypoglycemia causing alot of my wired symptoms. When I havent eaten for a little while, maybe 2-3 hours, I start to get this rushing, adrenaline, cog impairment, anxiety symptoms. Eating something carby relieves it... Again, no blood sugar issues came up in standard blood tests I had a few years ago.

Do you think those symptoms sound like it?

 

[Binkie4]

@Ryan 31337

Dr Bansal initially prescribed the acyclovir empirically. I did write to ask him after my first appointment if he wished to do more testing but he replied that the routine tests did not answer whether reactivation was ongoing, and more complex tests were expensive and not always reliable.

The following month however my GP did some extra bloods which detected serological evidence of past EBV infection, and Dr B did refer to these in a follow up letter to GP.

FYI- I had had a severe glandular fever type infection in about 1986 when working in a college. Three members of staff contracted it and we were all very ill, one hospitalised and I needed weekly blood tests for 4 months and a lumbar puncture. It took me about 2 years to get back to normal.interestingly this was at the time of the Incline Village infection in the US but on the other side of the world.

So I think he is regarding the EBV past infection as good reason to continue the acyclovir for the time being. He knows about the proposed heart surgery and thinks I would benefit from it. ( ugh)

He also diagnosed me with hypermobility and possible Dercums disease, an adipose disorder. If surgery doesn't improve my orthostatic issues I would be grateful for a pm about your doctor.

Hope your acyclovir continues to go well.


@justy hi I have been out this afternoon to the doctors. I called at the chemist afterwards for a flu jab but suddenly thought I should just check with gp first because of the heart. Am sure it will be ok, indeed advised. I need to stop now but will write as soon as I can about the mitral valve. I do remember you writing that you have a low level problem. Will share where I have reached with this.

Good wishes all.

 

[CFSTheBear]

I really know what you mean. For so many years pretty much all my ills were put down to 'just ME/CFS' but after a LOT of reading here and much persistence I've been able to divide and conquer a good chunk of symptoms away. Have I got to the root of the problem and cured PEM? Absolutely not, but I have improved QOL a great deal by treating definable issues that plagued me alongside.

That's why I bang on so much about POTS/OI, a great many of us have it without realising - I certainly didn't for the first 20 years of illness. Yet its impact is far reaching and treating it can make a massive change in our QOL. I was very glad to see that some of the comments, even from the more shadier orgs, in the recent CFS NICE guideline drew reference to the importance of isolating OI in CFS patients - hopefully a step forward.

I agree entirely. I'm trying to address POTS/OI for the next 6 months - the minor improvements I've made so far have allowed me to sit up, which in turn have allowed me to do one or two more hobbies that require me to sit up for a few minutes. This doesn't sound much but in the scheme of adding up little improvements etc.

Apologies for hijacking your thread @Fogbuster!

 

[Fogbuster]

I agree entirely. I'm trying to address POTS/OI for the next 6 months - the minor improvements I've made so far have allowed me to sit up, which in turn have allowed me to do one or two more hobbies that require me to sit up for a few minutes. This doesn't sound much but in the scheme of adding up little improvements etc.

Apologies for hijacking your thread @Fogbuster!

No problemo. Good luck with your Pots journey!

 

[ryan31337]

I suspect that I may have reactive hypoglycemia causing alot of my wired symptoms. When I havent eaten for a little while, maybe 2-3 hours, I start to get this rushing, adrenaline, cog impairment, anxiety symptoms. Eating something carby relieves it... Again, no blood sugar issues came up in standard blood tests I had a few years ago.

Do you think those symptoms sound like it?

Could well be. The symptoms match my experience, I also had a noticeable worsening of vision (blurriness), sweating and cognitive fog too. When it was more severe I could not sit up, nor could I bear any sort of stimulus (noise, light etc.). The tachycardia also made the POTS much worse and my breathing became quite dysfunctional. When it was at its worst I would have a window of perhaps an hour or 2 after eating where I could sit and function, after that I would have to go to bed and practically pass out, usually waking up 30mins later feeling better, until the next meal anyway...

As time went on and the hypos became more frequent I had unquenchable thirst, inappropriate hunger and weight gain. I also developed some odd dark coloured patches on skin folds. I think this all points towards BG regulation issues.

You'll probably be hard pressed to find a GP or endocrinologist that acknowledge this as 'reactive hypoglycemia' though, from what I gather that term is reserved for more deserving patients that have had parts of their GI tract removed or the like. We're just told its a self rectifying post-prandial syndrome and to eat less cake...or unhelpfully told to treat it like a diabetes hypo and to eat more cake when it occurs! Big mistake...

Its better acknowledged in the realm of OI literate doctors and thought to perhaps be more related to whacky adrenergic function, which impacts on BG.

 

[hinterland]

Hey guys,

Could you please recommend me the most experienced, knowledgeable and cutting edge CFS/ME specialists in the UK?

Someone I can discuss my symptoms with, get specific testing, cutting edge treatment (if there is such a thing?), etc. I live in the south, on the coast. But willing to travel far and wide if necessary.

Preferably, I'd like to see someone who specialises in improving immune dysfunction and cognitive impairment in CFS/ME patients.

Based on your location, have you considered Dr Kenyon at The Dove Clinic? It’s near Winchester.

I wouldn’t say he is an ME/CFS specialist as such, and he is very interested in some alternative medicine flavoured approaches so might not be your cup of tea. Also, inevitably the costs of attending this sort of private clinic tend to rack up quickly.

It depends what you’re after, if you’re looking to drill down into a precise immune diagnosis then he probably isn’t your man. Experimental treatments he might be able to help with though.

 

[Fogbuster]

Based on your location, have you considered Dr Kenyon at The Dove Clinic? It’s near Winchester.

I wouldn’t say he is an ME/CFS specialist as such, and he is very interested in some alternative medicine flavoured approaches so might not be your cup of tea. Also, inevitably the costs of attending this sort of private clinic tend to rack up quickly.

It depends what you’re after, if you’re looking to drill down into a precise immune diagnosis then he probably isn’t your man. Experimental treatments he might be able to help with though.

Thank you for your insight. Funnily enough my mum recommended him to me a few months ago! I was interested in the whole concept of the dove clinic, but I quickly found they recommend homeopathy as a treatment option. I mean if I was a clinician, I'd steer clear of having any association with it like the plague. I noticed they also offer FMT as a treatment option, really? I thought the Taymount Clinic was the only place doing that in the UK. I'm interested, but certainly skeptical. I thought the intravenous therapy looked interesting, but realised it was only with vitamin c and magnesium sulphate.

Have you had any personal success with the dove clinic?

 

[Binkie4]

Hi Fogbuster

Have been at gp this afternoon so sorry for not replying earlier.
Am not very strong on the science of ME so not sure my opinion of whether Dr Bansal would be good for you is useful but here goes.
He is the head of the local ME service based at Sutton hospital. All they offer is CBT and get so I do not recommend you go there but it's an indication of his involvement with ME: and he is an immunologist as well.
He is also a scientist as well as a clinician. I think he works with B cells but as I say, I am not a scientist. At the last IiME conference I saw a photo of him at a table talking to Ron Davis presumably about science.
That seemed promising.

He is personable, a good listener.

I am afraid I know nothing about MCAS nor do I know if he would do any other form of testing. He treated me empirically as I said to Ryan. He did diagnose me with hypermobility which I think you said you had. I believe that mitral valve prolapse is connected.

Perhaps it would be best if you wrote to him to see if he could offer what you are looking for.

Good wishes

Gill

eEDIT: added Dr B's name

 

[Fogbuster]

Could well be. The symptoms match my experience, I also had a noticeable worsening of vision (blurriness), sweating and cognitive fog too. When it was more severe I could not sit up, nor could I bear any sort of stimulus (noise, light etc.). The tachycardia also made the POTS much worse and my breathing became quite dysfunctional. When it was at its worst I would have a window of perhaps an hour or 2 after eating where I could sit and function, after that I would have to go to bed and practically pass out, usually waking up 30mins later feeling better, until the next meal anyway...

As time went on and the hypos became more frequent I had unquenchable thirst, inappropriate hunger and weight gain. I also developed some odd dark coloured patches on skin folds. I think this all points towards BG regulation issues.

You'll probably be hard pressed to find a GP or endocrinologist that acknowledge this as 'reactive hypoglycemia' though, from what I gather that term is reserved for more deserving patients that have had parts of their GI tract removed or the like. We're just told its a self rectifying post-prandial syndrome and to eat less cake...or unhelpfully told to treat it like a diabetes hypo and to eat more cake when it occurs! Big mistake...

Its better acknowledged in the realm of OI literate doctors and thought to perhaps be more related to whacky adrenergic function, which impacts on BG.

Very interesting. But very discouraging about the difficulty with getting a diagnosis, sigh. I also get worsening blurry vision and dificulty handling any sort of stimulus too. I get this pretty regularly on a daily basis. Looks like along with potential MCAS, I'll have to do most of the work myself without medical supervision. Unless I pop over to shanghai...

I'll at least give it a go trying to find someone who could diagnose me with reactive hypoglycemia.

 

[ryan31337]

I'll at least give it a go trying to find someone who could diagnose me with reactive hypoglycemia.

The endo I sent details for is very aware and usually recommends a ketogenic diet in the first instance. If it is reactive hypo you need to get off the rollercoaster of eating more carbs (been there!), taking them out of the equation almost entirely makes this easy.

I'm aware that he has prescribed patients pretty heavy duty stuff like octreotide too, though I imagine that was in very severe cases - what some of these poor primary EDS patients (with full blown MCAS & POTS too) go though is unimaginable

 

[Fogbuster]

The endo I sent details for is very aware and usually recommends a ketogenic diet in the first instance. If it is reactive hypo you need to get off the rollercoaster of eating more carbs (been there!), taking them out of the equation almost entirely makes this easy.

I'm aware that he has prescribed patients pretty heavy duty stuff like octreotide too, though I imagine that was in very severe cases - what some of these poor primary EDS patients (with full blown MCAS & POTS too) go though is unimaginable

I ended up having quite an annoying experience on keto, I ate one too many packets of pork scratchings, no joke haha, and its put me off them for life! But oh man, the thought of consuming mostly fat in high quantities again makes me want to , warm oil running down my throat... shudder

I was given chipotle butter as a side with my burrito the other night, instead of sauce..... it still haunts me

Despite following pretty strict guidelines I was having difficulty getting into Ketosis when I did it a couple years back. Apparently, about 1% of the population are not able to get into ketosis, this is according to the guy from selfhacked. I'll probably try it again sometime in the future, if all else fails.

I'll definitely be trying a low carb/moderate protein diet and/or a few 18 hour fasts. Probably a few day fasts too, to try and remodulate my immune system, as I've read that after only 3 days your immune system will start to regenerate. It sounds pretty promising to say the least!

 

[ryan31337]

Sounds like a good plan.

The keto diet is rather love/hate, perhaps about 50/50 here. Some lucky people like myself do fantastically on it, others whose bodies seemingly can't switch it on and feel miserable. My endo did recommend a number of supplements that supposedly optimise the diet, so perhaps some extra help from those will make the difference.

I'm dairy intolerant so no butter or cream for me I get most of my fat from daily avocado, nuts, coconut yoghurt and oils in cooking. It is interesting how my tastes have changed though, before adopting the diet I would be the guy that'd cut the rind off bacon and avoid skin and oils at all cost. Now I can't get enough of it!!

 

[Binkie4]

@justy
@Binkie4 - my regurgitation is only at 1 so luckily not in need of surgery, just keeping an eye on for now. i probably wouldn't manage surgery anyway as i have severe M,E now and the MCAS means i'm intolerant to pretty much all drugs. Just wondering what symptoms you are getting and what level your regurgitation is at for them to consider surgery? Ironically i also had a heart valve op as a child for a patent ductus arteriosis. Cant believe i have another heart valve issue now...

You asked about my mitral regurgitation. I was only diagnosed last year so it has all moved quite quickly. I thought I would be monitored for a longer period.
Briefly I employed a PhD exercise physiologist early in 2016 to try to help me get back to safe exercise. She was willing to read up on Workwell and other stuff so that it would be suited to a pwme, but she was quickly unhappy with a lot of objective measures like bp, O2 levels, high pulse and sent me back to gp who had already approved the exercise. I took the opportunity to ask for a referral to a cardiologist who at the first appointment took me for a walk including stairs.HR soared and actually I felt very ill for many months after that. We flew to visit our son in NYC returning by ship but I couldn't leave the cabin, even for meals.
Cardiologist referred me for echo and pulmonary tests. Lungs were fine but I had a mod-severe mitral prolapse. Six months later it had become severe confirmed by TOE. Symptoms are severe breathlessness: tachycardia better with bisoprolol. Severe OI and brain fog. Now mostly wheelchair bound. I was very shocked that I needed surgery so soon but on the positive side, all the medics agree that there is a good chance of improvement in symptoms after surgery. I am 70 so comorbidities are likely.

Of course I am worried about heart surgery also effects of anaesthesia etc , but I don't think I have a lot of choice. Dr Bansal has approved the decision. I have chosen to go to the Brompton and a very experienced cardiac surgeon who is doing loads more tests before operating, I think to choose best way to access. I tend to be ok with medications, not allergic etc.
Dr Bansal has already written to surgeon talking about post operative care, taking things more slowly than usual, and that physios should be prepared for this. I intend to have a copy with me at all times!

It's going to be an anxious few months but I have to focus on the possible positive outcomes. Still scary though.

From what I've read mitral prolapse is very common but may need surgery if it becomes severe as mine has. Have always had a tendency to breathlessness so perhaps I've had it a long time.

Good luck with yours.

Edit: added sentence beginning Dr B has approved...

 

[Kes]

Hi @ryan31337 just wondered who I should ask my GP to refer me to, to investigate possible POTS/OI please if they are not up to speed with it? Also, I just wondered what were the treatments for POTS that have improved your quality of life and could you describe how your quality of life has been improved I.e.what things can you now do that you couldn't prior to treatment? Thanks