has anyone seen Dr Stewart in Sussex (UK)?

[ryan31337]

now he's aligned himself with Barts and Peter White - steer clear although am going undercover in this clinic to see what it's all about!!!!

That wasn't my experience with him at all. No recommendation for CBT/GET and he actively encouraged investigation into OI (presumably against NICE guidelines). I think its fair to say that he probably thinks there's a larger mental component to the illness than we would like, but not to the extent that he ignores the obvious physical aspects like the ignorant BPS core.

 

[Rarnik]

I visited him in May 2014. Long session - too long for me, especially after travelling on train up there. Almost smashed head on pavement when I left as I was so tired and dizzy.

Everything seemed to be going well until I mentioned a long history of anxiety and depression had cleared up a couple of years before I got whatever this is. There was a short break in the proceedings whilst he discussed my case with the physio and when I came back, they said I didn't have cfs and they thought all my symptoms were caused by anxiety. I mentioned that I hadn't been depressed or anxious, hadn't reported being depressed or anxious, so where had they got the idea that I was experiencing a state of constant mental exhaustion and physical stress 24/7, 365 days a year, year on year and that it was being caused by anxiety. I got a 'polite' doctor's shuffle (misdirection) 'It must be very difficult not to have a diagnosis'. I don't see how that answered my question and I tried to ask for an answer but just got another brush off as he told me he would write to my doctor with his recommendations.

As they appear to be the only portal to me receiving a diagnosis (only 8 years in but the no help, no diagnosis thing is wearing a bit thin!). It's difficult when you are slumping because you haven't the energy to keep upright, your dealing with blurred or tunnel vision, one eye keeps shutting because it's too costly to keep both open and the person looking at you thinks this is anxiety.

If it is anxiety driven and I have complete unconsciousness with regard to it then the 2 nhs psychiatrists I have seen who have denied an anxiety or depressive basis are both wrong. My latest visit to a psychiatrist, he diagnosed cfs then told me that he could offer cbt/get on the nhs but he could offer neither at his practice. Then his department cocked up as the nhs does, at least a few times a year, but that's another story.

Off before I start really ranting.

Robert

 

[wiltedflower77]

Hi @Rarnik just wanted to say I totally empathise with your experience at CFS Sussex Clinic. I waited about 6 months for the first contact with them which was a group workshop type thing where they told us about how to manage fatigue by eating well, getting enough sleep, and pacing yoursel!! it was sooo basic and common sense it was hardly worth attending. Then I was assessed over the phone months later then sent a letter saying they couldn't diagnose me because I suffer from anxiety!!! I used to go to the gym and play tennis twice a week and now I have difficulty walking up the stairs to my 2nd floor flat. What a load of rubbish!! God I'm starting to get angry now talking about it! Better go and smash a few plates or something!! Anyway sorry you had a frustrating experience. Hope you are managing to get some answers from somewhere. Annie

 

[Rarnik]

Hi @Rarnik just wanted to say I totally empathise with your experience at CFS Sussex Clinic. I waited about 6 months for the first contact with them which was a group workshop type thing where they told us about how to manage fatigue by eating well, getting enough sleep, and pacing yoursel!! it was sooo basic and common sense it was hardly worth attending. Then I was assessed over the phone months later then sent a letter saying they couldn't diagnose me because I suffer from anxiety!!! I used to go to the gym and play tennis twice a week and now I have difficulty walking up the stairs to my 2nd floor flat. What a load of rubbish!! God I'm starting to get angry now talking about it! Better go and smash a few plates or something!! Anyway sorry you had a frustrating experience. Hope you are managing to get some answers from somewhere. Annie

Thanks for your response, Annie.

I've just had a copy of a letter sent to my g.p arrive on my doormat. It says, amongst other things, 'it would be helpful to know whether anxiety which was a dominant feature previously is still in evidence'. Rather annoying to see them say that in print, seeing as they made it up last time. Will be informing my doctor of such.

Yes, I remember the general group thing. I did worry when I looked at the other referrals bounding around the place, chatting about their tiredness. At the time, tiredness or fatigue as the sussexwide service calls it, was not my main concern or problem area. I was still at the tail end of 3 years of almost persistent illness. As well as the constant flu-like feeling, which varied in strength but was always there at a noticeable level, I was 'ill' with colds and flues(?) all the time. 9 months the first year, 10 months the second year and 10 and a half months the last year before I entered the never ill phase. I thought this illness seemed fairly important and unusual but the unit just glossed over it when I told them. I got the familiar sense that they 'believe I believed it' but they knew that wasn't really happening. I worried again when I read their response to my doctor, claiming anxiety and social isolation as factors or causes, in my perpetual state. I did wonder whether they were actually dealing with cfs/me as I understood it, or whether they were just dealing with persistent fatigue, as it said on their nhs page. Rather, they do say they treat cfs/me (what that convenient classification is, they don't elaborate) but it is symptomatically only described as a persistent fatigue lasting more than 4 months.

I managed to get past the phone call with a physio and I have to say, when I got to Haywards Heath, the actual chat and assessment was actually very pleasant. No one had been listening to me until the doctor who arranged the referral, though I had needed to play the 'it's ruining my life, boo hoo, emotional card' in order to rouse her from the familiar doctors' slumber. Yes, the illness is a serious crimp in my style but sometimes I need to get the doctors to act by letting them know how it is affecting me emotionally. I remember Doctor Stewart saying to me, that until I mentioned how the illness was affecting my life with my girlfriend, no work,etc (I think that's what I mentioned) that he had had trouble pinning me down but now he realised I was just an ordinary bloke who wanted to return to my life.

Right, made myself unwell but it sure felt good doing some typing. Goodbye.

 

[ChrisD]

I saw Dr.Stewart at HH last week (with an occupational therapist), I can only add to the shared experience of everyone in this thread in saying that I too waited around a year to get the referral and actually had really low expectations of what the session could offer. It ended up being around two hours + long and very thorough, although the majority of it was just therapeutic in that I was finally being heard and understood, and each nuance of my health journey was noted as contributory to CFS in line with their record of patient experience (E.g. Alcohol intolerance and muscle weakness for example).

I have been fairly proactive since my ''crash'' and almost immediately started on a range of radical protocols and had a number of tests and alternate treatments so I have made a slight recovery and also have become pretty well informed and in fear of sounding arrogant; I feel that I understand this condition more than atleast the occupational therapist. So I came in on the front foot and had to contain my frustration with the wider health system, but it was easy for me to be wound up at several points in the session.

As others have said, they are very much of the stance that CFS is emotional manifestation, and I couldn't deny the fact that I have gone through quite a lot of stress in the last three years and that this will have contributed. But to me it is quite clear that something else is at play. It's a similar situation to any GP that I have seen, they scroll back through my patient history to a time three years ago when I was very anxious, depressed and had insomnia. I have to reiterate that after successful dietary, supplement and lifestyle changes that I have restored my former relaxed and calm self who is coping well with a very testing illness! Stewart/Occ. therapist were hearing this to their credit but it doesn't seem to be quite enough to motivate them to delve into other avenues.

Stewart was fairly dismissive of the majority of tests I had had done (OAT, 23andme, Stool, Pyroluria, HTMA etc.) and insinuated that they were exploitative of desperate patients, which may be the case in some cases but as we see on these forums, a lot of people make big discoveries based on above tests and can make changes to improve condition significantly. He almost fell off his chair when I explained that I was taking up to 50G a day of Vitamin C and my improvement down to that, I also mentioned the clear improvement I had had with Bravo probiotic yogurt to which he responded that there were some studies to support that theory, but they quickly diverted back to Diet, emotions, pacing etc. It's really quite frustrating when you have put a phenomenal amount of time, money and thought into these improvements - every patient is a researcher - yet they are either entirely discredited or just slightly acknowledged.

There was a general underlying attitude that it was irresponsible of me to seek alternative health practitioners opinions over NHS opinion on things like B12 Levels and Iron Levels and potentially inaccurate NHS parameters when you consider genetic differences in patients. I had been told by a private Alt-health doc to Inject Methylcobalamin, but in a recent blood test it showed that my B12 levels were phenomenally high. So Stewart kept warning (Scaring) me about prostate cancer risk with High B12 rather than saying that he could appreciate why I had taken this route in absence of other options which I believe would be quite a humble attitude to take. Why do NHS doctors and specialists have a chip on their shoulder about the patient or Alternative doctors knowing better than them? Isn't it entirely feasible that this could be the case through further specialist experience?

Stewart seems to be very well versed on diet and nutrition, my diet is impeccable and he actually said that what I am eating could help to support many of his patients significantly - which was a nice compliment. But I really wanted to get deeper than the surface level, and talk about MTHFR, COMT, and various other gene mutations but as someone else said in this thread, I guess his hands are tied and he can't really talk too much about stuff like that as they are synonymous with experimental treatments.

Once we had gone through my entire history (Although missing out vaccinations, antibiotics etc.) then we went through a physical examination for the cerebellum reactions and sitting down/standing up POTS tests etc. And once everything else was eliminated then I received the CFS diagnosis which to me is a non-diagnosis and he disappeared very swiftly and left me with the Occ. therapist who offers a programme of 'resting' 'pacing' and group therapy. All of a sudden I felt just as lost as before I had walked in to the clinic - back to square one again. I will probably attend these session since i have the time and the energy to do them and they can only be slightly beneficial. But it just feels that you have been categorised as beyond functional medical help and the NHS have washed their hands of you but they mitigate by providing a 'management' plan to make sure you don't slip down the depression path and feel suicidal, anyone else think this too?

 

[MEMum]

They don't know what to do with you, or anyone with ME.
If only they would realise, and then admit, that they can only offer symptomatic relief eg for pain, but have no "treatment" it would help.
The reason for this false information re aetiology and progression of ME is PACE and the Wessely brigade.
Until the Media and Medics look at the evidence that PACE is a disgrace, should never have been published and shows, if anything that CBT and GET do NOT improve the health or function of people with ME, this erroneous theory will persist.

If you have energy for group therapy, are you able to come to #MillionsMissing protest in London on 12 May, not too far from Victoria/Waterloo?

I felt that the most useful part of attending an initial group session was chatting to others with ME, most of whom had gone thro all the "sleep hygiene/less screen time/ avoid boom and bust.." prior to coming to the clinic. Wish I had exchanged email or equivalent to keep in Touch.

Good Luck with next step, and glad you are able to still get out etc.

 

[ChrisD]

@MEMum I haven't been to London for some time, even though it's only an hour on the train. But knowing that other people can't and i am so passionate about this, I will come - Will just have to see how I am on the day (PM the details).

The whole ME/CFS NHS Scenario is begging for a documentary to be made, to show all the biological research studies, go to the progressive research labs and then return to UK, going undercover and showing the lack of adequate treatment and the effect it has on peoples lives.

I have also just remembered that Stewart said ''There is no clear evidence to show that ME/CFS effects Mitochondria'' insinuating that I shouldn't use Carnitine, RIbose etc.

He also completely discredited and didn't acknowledge that Bravo probiotic yogurt was having a powerful effect for me, what kind of message does that send out for the progression of research in this disease? If they will not listen to patient experience. Then as of yesterday we have a big study result on the Microbiome..... It's medicine from the dark ages, not the 21C

 

[MEMum]

Hi Chris
I don't want to encourage you to do something that can have a bad effect....My daughter won't be able to come, though she is able to go out for a few hours most weeks.
It's another ME Action #MILLIONS MISSING. I expect you saw coverage on here and elsewhere re the ones last year on 27 Nov and in late May.
The London one will be on 12 May outside the Dept of Health, ? Whitehall: with shoes bearing tags saying what people are missing from/the most. I would be happy to take a representative pair with a tag that you could provide wording for.
I had planned to go to the Sep event, but my back was too bad. I'm really hoping I can make this one.

There hasn't been much advertising. Hopefully the organisers will put up a Facebook event page soon.
If not I might start a PR post.
I understand that the US group have too many other advocacy/publicity things going on at the moment, so I think it's going to be mainly Europe.

 

[wiltedflower77]

Hi Chris, sorry to hear of your frustrating visit to the CFS service. Doesn't sound like anything much has changed there then! It's really appalling in this day and age with all the medical advancements there's been and yet there's millions of people found the world suffering with feeling ill for years on end with no treatment or recognition of what they are going through. I actually went to see Dr Stewart privately for nutrition when I first became ill in 2010 I don't think the CFS Sussex service was around then? He was helpful and helped me a bit with diet but so close minded to anything outside his little box. I remember asking him to test me for Coq10 as he was taking some bloods and I'd read about Coq10 being low in CFS. He wasn't very enthusiastic about it and tried to assure me it was probably uneccessary. Did it anyway and it came back being very low! And then told me to take Coq10.We are definitely are own researchers in this thing. Oh well I could go on for hours but there's no point and don't want to bore you senseless. When I went to the CFS service I had at that point been ill for 4, years. I had learnt quite alot so when I sat through the initial talk from the o.t's which seemed to be aimed at 10 year olds I rated it 3 out of 10. ,When they phoned me later on for the phone assessment the o.t asked me in an abrupt tone why I only rated it 3!!! Well at least I suppose you can go to the group sessions it will be nice to talk to others in the same boat. That's the most annoying thing about them not giving me a diagnosis a few years ago. It's very hard going through this and not knowing others going through it. People who don't have CFS generally don't understand and that gets frustrating too. If another person says to me ,'well hopefully with the warmer weather coming you might feel better!!!!' aaarrgh

 

[ChrisD]

When I went to the CFS service I had at that point been ill for 4, years. I had learnt quite alot so when I sat through the initial talk from the o.t's which seemed to be aimed at 10 year olds I rated it 3 out of 10. ,When they phoned me later on for the phone assessment the o.t asked me in an abrupt tone why I only rated it 3!!! Well at least I suppose you can go to the group sessions it will be nice to talk to others in the same boat. That's the most annoying thing about them not giving me a diagnosis a few years ago.

I found them to be very nice people, but they are completely brainwashed into the idea that they are even providing a service! My O.T exclaimed about how she adored Esther Crawley and what great work she was doing, and how she was starting to look into genetics and their relation to Graduated exercise. Considering the politics and uproar around Crawley, it was actually a little bit insulting to be told that. I guess, what with these forums and hours of research, I am jjust so far beyond GET as treatment and it becomes glaringly obvious that their hands are tied by cost and NICE guidelines to provide shoddy management plans that will mildly improve quality of life but they deliver it in a way that suggests they are providing a treatment

 

[Complex CFSer]

So glad I found this thread, which I found just through Googling Dr Stewart and hence joined the forum. I had an appointment at the CFS clinic and was already not impressed at them having a psychologist sit in. So I made it very clear that I am not anxious or depressed and pointed out that there is a lot of erroneous information on my health records. I have Ehlers Danlos and CFS can co-occur with EDS quite often. (Any other members with EDS might find this interesting article on EDS and CFS http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31542/full) So at the appointment, Dr Stewart asked me who diagnosed my EDS. It just so happened that it was the world-renowned expert in EDS and when I told him he name, he replied "Oh, well I'm not going to challenge a diagnosis by him!" which I thought was an odd comment at the time but thought he had just asked out of interest. Because I've had so many professional reports turn up with factual errors in before, I requested a draft report before he sent the final one as it's important to me that things are correct. He kindly obliged. But imagine my surprise and annoyance when the draft report turned up, and he had listed all my medical diagnoses into categories of "contentious" and "agreed". I was fuming. He had also put my EDS diagnosis under contentious! I have been on their books for ages as I had to keep rescheduling due to family commitments that had to take priority, but I expected due to the correspondence I'd had with them prior to my appointment, that there would be a definitive answer as to whether I have CFS or not. So I sent him a long letter responding to his draft report and have heard nothing since.

I am flabbergasted that a doctor trained in general medicine would be passing comment on areas outside his knowledge and qualification and challenging diagnoses. The comment he made in my consultation made sense once I received the draft report. He clearly had also been rummaging around in my health records without asking my permission or seeking consent, which is a Data Protection breach. Just because the records are within the NHS doesn't mean anyone who feels like it can access them without going through proper procedures and without patient knowledge. He was commenting on totally unrelated diagnoses I have which are so far outside his area of knowledge it's untrue and all the diagnoses he challenged were private ones!

I was also taken slightly aback that so many of the questions he asked me were highly irrelevant and he was making notes about some answers which I felt pressed to give but were absolutely irrelevant to a CFS consultation. I understand they need to look at a patient's environment to see if there are any potential contributors or causal factors to the symptoms but he was asking me what exams our eldest child was taking and even more irrelevant things.

I came away feeling, especially after reading the draft report, that they have no intention of diagnosing me with CFS and despite me asking in writing about whether the clinic makes recommendations for the patient's GP to refer for testing to rule out things that may be causing the symptoms, they don't do that either. It almost feels like it's just there to go through the motions of placating the patient that they have been seen. I don't care about the diagnosis of CFS (I'm not looking for one more label!) but I do want to know if I have treatable causes for the symptoms. Like many of you, I have had 23andme and I do have methylation issues, I may have mast cell issues, MTHFR mutations, had low phosphate in at least 2 blood tests (hypophosphataemia can cause fatigue) and various other possible factors. It just seems to me the ME/CFS clinic does not make recommendations to GPs but they have ignored my communications about it.

He wanted a list of my current vitamins and supplements (I'm rattling!) which I provided and he couldn't find anything wrong with doses. He made a point of giving a mini lecture at the consultation about vitamins when I talked about mega dosing for health, saying too much vitamin C can cause breast cancer and said he'd written to Holland & Barrett asking them if they gave out advice to people buying their vitamins!

So at the moment I am in limbo-land. Not impressed with how it's gone and still seeking answers.

 

[wiltedflower77]

Hi @Complex CFSer sorry to hear of yet another person's frustrating futile appointment with the Sussex CFS Clinic. It's pretty much pointless even if they do give you a diagnosis of CFS because your still in limbo land as who to go to to get proper treatment from. Please let us know if you find any helpful drs in the UK. I just wish Dr Myhill saw new patients but she's not done for years. Good luck

 

[Complex CFSer]

Hi Wiltedflower77, yes I think this clinic is a vast waste of time and money. It seems to exist just to placate people that they are being taken seriously and being seen (although even that's debatable considering some have been fobbed off that it's their anxiety etc.). Do we really need a clinic to tell us the obvious such as: lose weight, improve your diet, try some vitamins and gentle exercise. By the time people get there it's likely they've already tried what they can and seeking medical help is a last resort. I mean if someone is fat, they will know they are fat and that they have no energy because they overeat/eat junk and barely move, they wouldn't be asking the doctor why they are exhausted. So the issue seems to be getting sideways referrals to properly investigate the causes of the CFS. It could be ME (which has a real physiological basis and research now shows there are blood tests that can show up cytokines etc.) or a chronic shortage of vital vitamins or skewed hormones or something which endocrinology tests would identify, or a metabolic cause etc. and until the NHS invests a little bit of money in proper testing (instead of spending money on a clinic which does very little), people are being sent round in circles. It's funny I had actually sent some research I found to the clinic, turns out it was Dr Myhill's article. Still waiting for feedback from the clinic!

 

[wiltedflower77]

Yes I totally agree with everything you've just said. I was astonished at the common sense things they were suggesting to people to do. Eat healthily!! Your kidding me why didn't I think of that seven years ago!! When I went for the introduction day thing they were actually talking down Myhill as if she was some crazy witch doctor because she was promoting a paleo diet!! That was 2014. Would love to know the feedback you get! Will be worth a laugh! We do get passed in circles. I'm going back to the rheumatologist again because my GP doesn't know what else to do with me.

 

[Complex CFSer]

I think the NHS has a standard procedure to pooh-pooh anything that they don't want to fund! I hope your rheumatologist helps. Do you have EDS? I have EDS and it does cause tiredness but this chronic fatigue business is on a scale of it's own.

 

[wiltedflower77]

No I don't have EDS thankfully. I have lung conditions, and an immune deficiency called SPAD (specific polysaccharide antibody deficiency). None of them cause me fatigue though as they're all well managed and under control. Hope you find something that helps your symptoms a bit. I know it's a bit of a minefield but there is a lot of good info on here. I will pm you a really informative thread that someone else sent me.

 

[chelsea49]

I saw him a few years ago, his knowledge on nutrition is extremely basic/generic and outdated, he has no knowledge about methylation or the other forms of folate, b12, he will suggest for you to take folic acid and cyanocobalamin supplements rather than the other forms. He also suggests holland and barrett supplements which really is a terrible brand using tons of nasty binders and never has the active or absorbable forms of the vitamins.