Top 3 Investigatory CFS/ME specialists in the UK?

[SamanthaJ]

I see a group of good doctors in London/South East, led by a cardiologist that specialises in OI. They have good knowledge of the issues we face, they just don't call it CFS for obvious reasons. Having demonstrable OI is a a good 'in' to get under their care, but in my experience they have gone much further, investigating hypermobility, MCAS, SIBO, histamine intolerance, sleep disorder, exercise tolerance, chronic viral infection, Lyme, genetic & nutritional issues etc. The majority of the testing has been on the NHS too.

Let me know if you're interested in contact details for the above.
Ryan

Hi @ryan31337 please would you be able to PM me the details of this POTS doctor, when you have time? (no hurry) I had hoped I wouldn't need to travel to see someone, but had a rubbish appointment at my local hospital last week... So looks like I need a plan B! Thanks for your help.

 

[ryan31337]

Hi @SamanthaJ,

Unsure if its a forum bug or your personal settings, but I cannot start a conversation with you. Feel free to start one with me

Ryan

 

[Mithriel]

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.

That sounds like actual diabetes, you could need a glucose tolerance test.

Could I say something very loudly WE DO NOT GET REACTIVE HYPOGLYCAEMIA!!! That is when there is a high load of carbs so the body releases insulin so the blood is left short of glucose.

The drop in blood sugar we get is most likely caused by autonomic dysfunction. When a healthy person exercises the autonomic nerves send a signal to the liver to release glucose. If this signal doesn't go we have to eat some carbohydrate to get glucose into our blood stream. So it is important to distinguish reactive hypoglycaemia where you are better with LESS carbs from autonomic hypoglycaemia where you get better with MORE carbs.

I feel very strongly about this because I spent years being told I had anxiety, that I was eating too much sweet stuff (not believed when I denied that) and a generic that I should lose weight so I was desperate to not eat anything. When I said I collapsed after having a piece of chicken for lunch, I was mocked because "a calorie is a calorie" Grrr.

The hypoglycaemia cuts in at higher levels than for diabetics taking insulin so you may well be told that there is nothing wrong. Normal levels are set for healthy people.

Basically, if a glass of coke or a square of chocolate helps you, go for it. We are experts in our own bodies.

There is a lot of information available about pacing using a heart monitor and the way you can change how you do things to protect our broken aerobic systems. The videos by Dr Mark Van Ness are very good.

These are all things you can do while trying to see a doctor. I hope you get a good result but at least there are things that we can do if we are left on our own.

 

[ryan31337]

Hi @Mithriel,

Could I say something very loudly WE DO NOT GET REACTIVE HYPOGLYCAEMIA!!! That is when there is a high load of carbs so the body releases insulin so the blood is left short of glucose.

I disagree and think its rather more complex than a simple relationship of blood glucose and insulin levels.

In the first instance it is very possible that gastric motility disorders linked to POTS & hypermobility, which many of us have comorbidly, bring about Reactive Hypoglycemia in the more traditional sense. I.e. when GI dumping triggers large insulin releases.

But sympathetic/adrenergic activation also plays an important part in regulation of glucose levels, those of us with tendencies towards HyperPOTS will also have impairment due to this.

These factors are in addition to the simple model of dysautonomia affecting insulin release that you mention.

Basically, if a glass of coke or a square of chocolate helps you, go for it. We are experts in our own bodies..

This is dangerous advice without knowing how all of these competing regulatory systems are working.

In my case, increasingly frequent carb intake did indeed improve things (for some years), until autonomic dysfunction became so severe that very low carb was the only way to go.

Its not unusual to see these 'postprandial syndromes' progress to insulin resistance and T2 diabetes because of this trend.

Ryan

 

[SamanthaJ]

Hi @SamanthaJ,

Unsure if its a forum bug or your personal settings, but I cannot start a conversation with you. Feel free to start one with me

Ryan

Sorry, I did seem to have my settings so no one could speak to me, I'm sure I didn't do that on purpose! Have started a conversation.

 

[Mithriel]

We are all different, but my hypoglycaemia always happened when I was "exercising". I always had the same breakfast but whether I made it till lunchtime depended on what I was doing, so for me it was a simple equation of too much exercise and not enough glucose.

It was very frustrating because it meant that it kicked in as soon as my ME felt a bit better.

ALL my symptoms have been related to energy problems. The amount of exertion I do the worse my symptoms. The description of ME as " able to lift a bag of potatoes over your head once, but unable to lift a spoon to your mouth five times" describes me perfectly and my post is meant for people who have a disease expressed like mine who may be getting the dismissal I had for years.

A single square of chocolate every few days will not cause diabetes.

 

[ryan31337]

Hi @Mithriel,

I absolutely agree with all points in your second post. We are all different and with your presentation of symptoms and nothing else going on I think you're probably doing the right thing.

What I had to call out was that in your previous post you said in very clear capital letters that we all categorically do not have reactive hypoglycemia and that treatment with carbohydrate is therefore harmless - I wanted to make yourself and others aware that this is an inappropriate assumption and flag up some reasons why.

All the best,
Ryan

 

[Sidney]

Hi @Fogbuster,

Do you have orthostatic intolerance?

I see a group of good doctors in London/South East, led by a cardiologist that specialises in OI. They have good knowledge of the issues we face, they just don't call it CFS for obvious reasons. Having demonstrable OI is a a good 'in' to get under their care, but in my experience they have gone much further, investigating hypermobility, MCAS, SIBO, histamine intolerance, sleep disorder, exercise tolerance, chronic viral infection, Lyme, genetic & nutritional issues etc. The majority of the testing has been on the NHS too.

I was prescribed mast cell stabilisers by one of the docs, but I doubt you'll get IVIG or the like from anyone in the UK. I understand Dr Bansal prescribes anti-virals but that's probably about it.

Let me know if you're interested in contact details for the above.
Ryan

Is it too late to ask you for that information? I am coming now on one of my frequent visits to London, and moving back there next summer. I used, long ago before I had ME, (and OI And POTS) to belong to a group in SE1; but my membership there has probably expired. And I have never found the answer over here ( N. California). If it isn't too late, I'd be very very grateful if you could message me...
Many thanks, and apologies for out of the blue interruption !
Sidney

 

[ryan31337]

No worries @Sidney, I've sent you a PM.

 

[Heart Face]

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.

In order of the best symptom reducer for me: 30 mins to an hour sun exposure, moderate to extreme cold exposure, CBD oil, walking in the woods for 20 mins+, licorice, hi-maize, zinc and 5htp, all have an effect of putting me back in kilter. It feels like everything normalising. Interestingly, they all have an immune modulatory effect.

My main troubling symptom is chronic brain fog I get from my extensive list of food/chemical sensitivities, along with the varying wired fatigued state which ensues after eating or drinking certain foods/beverages.

I react to the exact same food groups people with mast cell disorders react to, their most problematic foods are my most problematic too. That's pretty interesting, but confusing, as I don't get anaphylaxis, flushing or bad skin issues. I also got nothing significant back from my histamine, tryptase and one other mast cell test. But I respond positively to some mast cell stabilisers...

If the CFS specialist is experimental, that's a big plus for me. I know this is probably a pipe dream, but if there's a UK specialist who'd be willing to use IVIG, a pharmaceutical immune modulator or a mast cell stabiliser to try and treat my symptoms, that'd be a game changer.

Would they be willing to do this if nothing significant has come up in tests for me so far? I have my doubts.

Perhaps if they knew what to test for based on my specific collection of symptoms, we could get closer to a cause or at least have a better picture of what's going on.

Thanks for reading!

Hi,

Interested to know how you’ve got on?

 

[Kenzie33]

Hi @Fogbuster,

Do you have orthostatic intolerance?

I see a group of good doctors in London/South East, led by a cardiologist that specialises in OI. They have good knowledge of the issues we face, they just don't call it CFS for obvious reasons. Having demonstrable OI is a a good 'in' to get under their care, but in my experience they have gone much further, investigating hypermobility, MCAS, SIBO, histamine intolerance, sleep disorder, exercise tolerance, chronic viral infection, Lyme, genetic & nutritional issues etc. The majority of the testing has been on the NHS too.

I was prescribed mast cell stabilisers by one of the docs, but I doubt you'll get IVIG or the like from anyone in the UK. I understand Dr Bansal prescribes anti-virals but that's probably about it.

Let me know if you're interested in contact details for the above.
Ryan

Hi Ryan, I was wondering if you could provide me with the details of the above medical team as I have possible cfs, almost definate mcas, I have hypermobility and potts. I also have crohn's disease and so worry about sibo and believe from my symptoms that I may well be suffering from chronic viral infection. When i saw this post i was struck by what a good 'fit' this may be for me! I think my 'way in' would be the mcas because my gp wants to refer me for this but wants me to find the best one to refer me to as we already tried an immunological referral but it turned out they didn't deal with or diagnose mcas :s and dont want to waste any more time. I'm incredibly unwell, my quality of life has become nearly non existent and I'm absolutely desperate for help. If this needs to be done in a private msg could you tell me how to do this cos I cant work it out. Many thanks in advance eagerly awaiting your reply, Euan

 

[ryan31337]

I've sent you a message @Kenzie33

Ryan