Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
Discuss the article on the Forums.

Top 3 Investigatory CFS/ME specialists in the UK?

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Oct 18, 2017.

  1. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    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... o_O

    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! :)
     
    Binkie4 likes this.
  2. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    There are no CFS/ME specialists in the UK who do this kind of testing and treatment. Th nearest specialist to the UK is Dr De Meirleir in Belgium. If you make a search of his name there are a lot of posts about him. He offers low dose scig, but may offer IVIG if your case warrants it, but you would have to travel to Brussels for it.

    Otherwise you could try an MCAS Dr to discuss your symptoms and try a mast cell stabiliser. I see Dr Croom in Leicester Spire.

    All testing can be normal in MCAS. You dont need to get ana, hives or flushing to have mcas. Mine began without these, but has progressed.

    I dont know much about histamine intolerance, but you might consider this too.
     
    pattismith and MEMum like this.
  3. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    which mast cell stabilisers do you respond to and what is the response?
     
  4. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    Quercetin, resveratraol, curcumin, vitamin c, zantac (just helps, not sure its a M stabiliser)
     
    justy likes this.
  5. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    Thanks Justy. I'll definitely be considering Dr Croom in Leicester. I was hoping I could find someone who was a bit more varied with their treatment options. But obviously, that likelihood is looking bleak. I will also consider Dr De Meirleir, but with the recent controversy surrounding him and stories I've heard, I'm a little skeptical of his methods, but we'll see.
     
    justy likes this.
  6. ryan31337

    ryan31337 Senior Member

    Messages:
    447
    Likes:
    992
    South East, England
    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
     
  7. ryan31337

    ryan31337 Senior Member

    Messages:
    447
    Likes:
    992
    South East, England
    Splitting hairs but Zantac (ranitidine) is an antihistamine, so I imagine its better described as blocking mast cell mediators rather than being a mast cell stabiliser.

    Either way, its one of the common MCAS first-line treatments, along with fexofenadine or cetirizine. Cetirizine is OTC and well worth a shot if you haven't tried it already.

    Personally Nalcrom (sodium cromoglicate) has been working best for my GI & subsequent skin reactions, prescription only though.
     
    justy likes this.
  8. Binkie4

    Binkie4 Senior Member

    Messages:
    520
    Likes:
    2,404
    @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.
     
    justy and MEMum like this.
  9. RuthT

    RuthT

    Messages:
    65
    Likes:
    371
    Wd be good to have contact details & referral route too. Thanks.
     
  10. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    Hey Ryan,

    I've been tested for it as I suspected it, but like all tests I've had, nothing unusual came back. I'm definitely all ears regarding the place you go to, especially considering that you've got most of your tests done on the NHS, that's encouraging stuff! Please do PM details when you get a chance.

    I came up positive for SIBO and Leaky Gut at Biolab testing a couple of years ago, which is based in central london. But I'm not exactly sure what to make of it really. I did a very restrictive diet for a year and a half along with a whole range of supplements, couple of elemental diets where I had significant symptom reversal, but had to eliminate the amino acids and most of the fat to get significant symptom relief, basically only eating honey... so it was unsustainable.

    My diet hasn't been very good for quite a long time, so obviously my GERD has got worse. I now keep away from too much acidic foods.

    I believe I may have DSPS, as I very rarely feel tired at the time I should in the evening. Taking an SSRI recently has worsened this, which is a tad annoying. I'm going to buy some blue blocking glasses off amazon and I'll see how that goes.

    I was diagnosed with EDS 3 by a professor of immunology a couple of years ago, my knee joints and shoulder joints feel too loose. It doesn't feel like I have enough soft tissue in between my joints, so doing push up's or certain yoga exercises puts a LOT of strain on my joints and just doesn't feel right. It aches enough to make it very uncomfortable, until I drastically reduce the posture or intensity of the exercise. Also my neck, spine, knees get pressure around them, so I have to quite regularly crack at least one of them to relieve the pressure. Perhaps my EDS will be my "in" to get care?

    Maybe they'd be able to look into why I have the exact same food group issues as people with mast cell disorders? Do you think a doc may be willing to prescribe me a mast cell stabiliser even if I don't have anything in tests come up, but have most of the symptoms and react to the same foods?

    Sorry I took so long to reply, it's pretty darn foggy over here in my brain today! :confused:

    Thanks!
     
    justy likes this.
  11. Janice Hargreaves

    Janice Hargreaves

    Messages:
    56
    Likes:
    171
    UK
    I have found Dr Bansal very willing to discuss the Biomedical Science of ME/CFS when I've had a private consultation with him. My GP/local CCG would not fund a referral. He is both an Immunologist and an Allergist. So maybe you could try e-mailing him your thoughts to see if he can help. I found he was honest and straight forward when I was asking to be measured on a range of cytokines. Good luck.
     
    Binkie4, Fogbuster and ryan31337 like this.
  12. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    tests for MCAS are usually negative - it is a clinical diagnosis.
    I also have possible EDS - waiting to be well enough o travel to London for a private Dr, also hoping to get to see the above discussed cardiologist as i also have a mitral valve prolapse with regurgitation and possible OI.

    all these things really go hand in hand and a lot of them have 'them' all - EDS, MCAS, SIBO OI/POTS etc.

    @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...
     
    Binkie4 likes this.
  13. markielock

    markielock staying independent, one day at a time

    Messages:
    319
    Likes:
    1,825
    Scotland, UK
    On the topic of known CFS/ME specialists, is there actually a definitive and kept-up-to-date list anywhere? This has been something I have meant to ask. I really don't know the landscape of specialists, to my detriment.
     
    Binkie4 and Fogbuster like this.
  14. ryan31337

    ryan31337 Senior Member

    Messages:
    447
    Likes:
    992
    South East, England
    No problem, will PM you @Binkie4, @Fogbuster & @RuthT

    @Binkie4, out of curiosity was the acyclovir prescribed empirically rather than on the basis of any concrete tests? I'm going down this route self-treating with promising results, though I think in my case I have good evidence of viral reactivations.

    @Fogbuster, I would think that's likely. The cardiologist is very aware of the EDS/MCAS/POTS triad and although I only score 1/9 on the Beighton test, he recognised several other signs of hypermobility and indeed started his letter to my GP describing just that.

    The standard workup in his clinic was an active stand test or a tilt table (dependent on history of syncope), 24hr BP monitor, 7-day ECG, echocardiogram, pulmonary function test and cardiopulmonary exercise test. Some really useful stuff to have done if you've been ignored by doctors all your life, as in most of our cases.

    The mast cell doctor (a specialist in Mastocytosis who is increasingly aware of MCAS/EDS/POTS) was quite pragmatic about MCAS, he was willing to prescribe the basic treatments without positive test results because he feels, rightly imo, that the tests aren't reliable.
     
    sb4, justy, RuthT and 1 other person like this.
  15. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    Very interesting. I'll most likely drop him a message. Thankyou
     
  16. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    Good point. I don't think there is a formal list from what I know, but there should be! Unless someone who knows can chime in.
     
    markielock likes this.
  17. jstash

    jstash Senior Member

    Messages:
    122
    Likes:
    538
    Just wanted to add a little balance to the message above - I saw the same cardiologist and he was very helpful when it came to POTS but sort of left me in the lurch as to any ongoing care, in terms of the approach above. Given that our experiences are so different I'd imagine the average patient would maybe have a better experience than me, but just thought I'd say.
     
    sb4, justy, ryan31337 and 1 other person like this.
  18. Fogbuster

    Fogbuster Senior Member

    Messages:
    202
    Likes:
    96
    Ok. So I presume it's best to use both MC blockers and stabilisers together for a combined effect? I think I've tried at least one of fexofenadine or ceterizine, and don't remember experiencing much benefit...
     
    justy likes this.
  19. ryan31337

    ryan31337 Senior Member

    Messages:
    447
    Likes:
    992
    South East, England
    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.
     
    sb4, justy and Binkie4 like this.
  20. ryan31337

    ryan31337 Senior Member

    Messages:
    447
    Likes:
    992
    South East, England
    Yeah, usually the case. An antileukotriene like montelukast can be thrown in too, as that's another mast cell mediator.
     
    justy and Fogbuster like this.

See more popular forum discussions.

Share This Page