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Presentation from one of the Vancouver clinic doctor

Valentijn

Senior Member
Messages
15,786
It's not just "child abuse" but any kind of trauma during childhood can contribute to a person coming down with these syndromes.
They don't contribute to it, according to higher quality prospective studies. A link was only found in lower quality retrospective studies, which are notoriously subject to recall bias.
 
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panckage

Senior Member
Messages
777
Location
Vancouver, BC
i am not sure if your dr is a well known dr by this community, however I would be very surprised if your physician acceptd to give you Ampligen, Rituximab, Valcyte and VIstide.If so please do share who that person is I'll be right over.
He's not as I alluded to he mostly knows how to look up things on pubmed :p
I'm not quite ready to spend $20k+ on something that may or may not help... but ok challenge taken, I'll ask him about the Rituximab study and see what he says :D
 
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Kati

Patient in training
Messages
5,497
W
Katie I would venture to say it's the same with most Canadian doctors from the east coast to west coast. Here in Ontario they think it's all bunk and do little to no testing. Bingo on the lack of knowledge of function of natural killer cells.

Gary
We have to challenge that. With the elections coming, it is time for a new leadership which will respect patients with ME and FM as human beings and will fund research and clinical trials.
 
Messages
29
Location
Toronto, Ontario
I saw this doctor and I can say he is not in the psych symptoms camp. All his prescriptions were for serious level drugs. And there is a rituximab trial coming up for patients of the clinic. I don't agree with him on everything, but you will not likely find one doctor to meet all your needs. This doctor is covered my health care and includes social worker, nurse practicioner, nutritionist, naturepath, physical therapy and I think I'm forgetting others. You get to choose which of these you want to see apart from the MD.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I had my first visit to the clinic. So far I'm very underwhelmed. 3 different practioners have talked to me about "chronic fatigue." They can't even add syndrome on the end....
For this program we are told that we must bring a binder to our appointments with all our stuff. Well the 3 different practioners didn't even ask about it. By the 3rd one the questions were getting hard so I asked her if she wanted to see the binder. She was like "Wow I totally forgot about that." She took some stuff out of my binder but still forgot to take out the evaluation form...

The office was disorganized and they kept apologizing about it (even though I never made it an issue or even thought about it until they kept mentioning it... ). I had 3 questions about the treatment, none of which were answered. I was more just deferred... Well here sign up if you like and you can learn more. Of course you don't have too (we are really overbooked as it is!)

It feels like a restaurant that doesn't publish their menu. We are supposed to go in and request a meal. If by chance it is something they serve we should feel greatful because it was personalized and made just for us. Uh no.

I would hope this office would be conscious of our brain fog and slow cognitive processing. Getting asked point blank "what would you like to improve about your condition? " is pretty unexpected and would be much better if we would be given notice and a list of possible treatments. Instead it just feels like lip service

Haven't seen Dr. Arseneau yet, so hopefully it gets better...
 
Messages
16
@panckage My initial experience and impression was the same as yours including the evasive answers as to what the program is and the 'overbooked' type remarks.

I'll be discharged soon and its still not clear what the program is...:thumbdown: As you said lip service. Smoke and mirrors come to my mind.

I'm severe and was forced to attend a 1 1/2 welcome group session as a requirement to see a doctor. When I queried what if I can't, the remark was there's plenty more on the waiting list behind me. I went and crashed bad 20 min. in and had to leave. I walked into the clinic...went out in a wheelchair.

I had to fight months to have them honor there previous promise to see a certain doctor there. Saw him once and was never followed up again. No meaningful testing or treatment is offered.

I did my appointments via phone after that and really its just basic advise from dietitian or naturopath etc. Most of which will be learned in the 2 year wait to get in.

Some staff are nice enough to talk with and others there is a very strong psychosocial undertone. After my intake with the nurses was over I was left feeling like they did a sneaking psych exam on me. They summed all I said up fatigue even though that was not mentioned by me. It seemed they were uninterested in any symptom other that fatigue, and heard on more than one occasion its not so much I'm sick, its that I'm just really fatigued.

They take months to call to book follow up appointments. 5 months at one point if I remember right. They missed 3 appointments on me, 2 of which were not cancelled but they just missed. The other I received about 4 hours notice of cancellation. No real apologies and the same 'we have lots of other patients' attitude if you voice a concern or complaint.

I didn't attend or take part in their CBT course or speak with the physiotherapist.

There's more but hard to write it all. Bottom line, they try to dress it up as biological, and they promote this extensive personalized "program" but its really nothing more than shuffling patients around and keeping them busy going nowhere.

My go there has not been great. I hope that you get more out of it than I did...:)
 
Messages
29
Location
Toronto, Ontario
I did not have any of these experiences! Maybe they have changed some things? The initial intakes were three appointments that were all done by phone which I thought was great. They took my back story and that freed up more time for the doctor.

The only one I had to do in person is the apt with the main CFS specialist MD. Overall I am happy with it and he gave me drugs I have not had access to before despite having CFS for more than 15 years, doctor shopping, educating myself daily and requesting specific meds from doctors and NDs.

There was a follow up over the phone which was helpful in a way, especially if you have brain fog and were overwhelmed with the appointment and all the options you have to choose after you see the MD (which are the ND, nutritionist etc).

All the appointments were perfectly on time. And I'm happy I can see them all by phone other than the MD and if I want to see the physio that of course is in person.

I did not hear anything about CBT so I don't know if that's because they know I don't want to do in-person visits.

Overall super happy with the meds I did get. And again every doc is different so this doc is not going to meet all my needs this is just an adjunct to my GP who is great and my ND who is willing to try almost anything.

The nutritionist has the bonus of being very willing to fill out the forms to get you more on your Disability.

All the staff were very nice in office and they offered to wheel me out even though I walked in and never requested a wheelchair.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@Cornichon

Your experience may have depended on when you were seen at the clinic. Initially the clinic director was Alison Bested. As time went on she was prevented from taking the time to do right by patients and so left the clinic. Her replacement was someone without any real understanding of ME and the treatment program became very different at that point. This I gather from previous threads following people who've been to the clinic and from news reports.

See: http://www.vancouversun.com/health/...men+clinic+leaves+abruptly/9865147/story.html
 
Messages
29
Location
Toronto, Ontario
I remember the Bested controversy a the clinic. I also saw Dr Bested in Toronto before I moved to BC. I wouldn't say the Dr Bested experience was any better. Though their testing was certainly better. They did the immune system test which is very hard to get in Canada and the tilt test and fibro points test. I believe, if I remember correctly, Bested also tested for more viruses and vit D. None of those were done at the CCDC in Van.

That part is really a shame, but in terms of the quality of the doctor visit and what kinds of meds, support and validation (including getting on Disability) you will receive it was the same.

In fact Dr Bested in her Toronto clinic did not offer me any new meds whatsover. That was the first time I was getting diagnosed and there were certainly dozens of meds I could have tried.

Now that I have tried 150 treatments already it was impressive that Dr Arseneau still had some med ideas he was willing to try.

Overall unless you know a better specialist in BC, who will do a diagnosis, get you on Disability, do those hard to get tests, and offer you meds that a GP wouldn't, I would not in any way try and discourage people from getting help from this clinic.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
Oh God I'm pissed!

So I just took a day off work to have the phone call from CCDP. I was told that the appointments would be booked today and it would take 30min. I have a complicated schedule so I had everything ready.

Well just like the "binder" they promote it was a total fail. The phone call was about 5 yes/no questions that took less than 5 minutes. No appointments were booked. I was just told that for what I had chosen (physiotherapy, nutritionist, and ?) I would be put on the waiting list. I told her about what I had been told previously and mentioned if done over email I wouldn't have to miss a day of work. She gave a very stern "I don't do email. "

The nurse tried to push group therapy and other emotional /social treatments. I said from the beginning "no group therapy." She was like ok, not now but she would ask again in the future. Again I told her "no group therapy" but again she said she will ask again in 6 months. I told her I was being made to feel like a baby

She kept saying about checking up in 6 months. She couldn't tell me what would happen at the check up other than she would ask about group therapy AGAIN.

I guess choosing no pissed her off because kept saying how she would discharge me from the program in 6 months instead of doing the followup with her. She said this at least half a dozen times

Meanwhile none of the questions I asked were answered again. There were also miscommunications from last appointment that weren't sorted out. She didn't seem to be able to converse beyond her predetermined script

With Dr. Arseneau he recommended marijuana for sleep (he knows I already use it for other symptoms). I wasn't very interested but he pushed it on me. I thought why not? At least I can be legal. Well I don't think he even believes in the treatment he pushed as he expects us to pay $540 as well as take a day off work to see some ghetto cannabis clinic in Abbotsford. Is this a joke? Meanwhile the sleep drug he recommended (trazadone) for the future. I looked into it and seems the most promising thing the clinic has for me. But it sounds like i don't even have a follow up with him planned? He said I would have a followup but with the nurse it sounded like no further follow up appointments with him were planned? Umm......?? I think I will probably just ask my family doctor about it as it will save a lot of frustration. As well Dr. Arseneau never gave any indication of which treatments were covered and which I would have to pay for... Trigger point injections sounded interesting but now who knows

Still hoping for something positive out of this clinic but my hopes are getting lower and lower. All they seem to care about is shoving people through the program so they can brag about the number of people they saw
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
The revenge!

I went to see the nutritionist. I came well prepared with a list of food intolerances, my diet, as well as questions all written out. Her skillset was more about macronuturient percentages. She was unable to give hints about which foods I might try. She was respectful and did the best she could. She was also honest about her skills which was the first practitioner at this place who made me feel like I could trust her. I was satisfied with this experience, although if I was given the nutritionist's abilities I would not have gone. It would have saved both me and the nuritionist's time and been helpful for their ridiculous 2 year wait list

The physiotherapist would not look at my body. I came in workout gear but was promptly told this wasn't an normal physio and that someone should have told me that. Like other appointments this did not happen. I was very clear about my injuries and chronic deconditioning issues. The PT just avoided this. After much frustration I asked what she could do for me. She said she could help my energy. What she finally explained sounded like GET. Forgetting the 'research' associated with what she explained, it absolutely no sense in my situation. Her response was incredulous and just wanted to argue about what I had experienced. Somehow my experiences aren't valid. She took every chance to try to get me to agree about some vague theory that was irrelevant to PT. My belief system must be why I have "chronic fatigue." Its all my fault definitely!

To add insult I was asked several times have I considered seeing a PT? So a PT avoids anything PT and then asks me to see a PT outside the clinic? This is what I waited 2 years for? Give me a %#^$ing break.

Want a PT that won't be a PT? Well then goto the CCDC!!! At the end of the hour long appointment she mentioned that maybe we could get to the issues I talked about in the beginning of the appointment next time. I'm not going back. At one point she even told me what the 'ideal heart rate' was for exercising with chronic illness. She repeated this a couple times. What the hell does it even mean?

The irony is if I met her in a regular PT office and I had hidden ME I bet she could have been helpful for me. This philosophy of this clinic prevented that
 
Messages
29
Location
Toronto, Ontario
I continue to overall take the positive from this clinic. The nurse practitioner was VERY knowledgeable about migraines - like my doctor + my normal ND but better.

The nutritionist told me to triple my protein and not much else. Not sure what that is based on. The nutritionists know their way around the nutritional supplement form, which is very hard to get but is 200$ more a month which is fantastic for increasing your food quality and affording that high level of protein! If I am successful with that application it will be well worth the two phone appointments.

I declined the OT and PT. They did tell me the PT doesn't do physical therapy.

Interested to see the ND they have and see what she says.

Overall you take the positive from each doc you see discard the rest. This is a free program.
 

Kati

Patient in training
Messages
5,497
The revenge!

I went to see the nutritionist. I came well prepared with a list of food intolerances, my diet, as well as questions all written out. Her skillset was more about macronuturient percentages. She was unable to give hints about which foods I might try. She was respectful and did the best she could. She was also honest about her skills which was the first practitioner at this place who made me feel like I could trust her. I was satisfied with this experience, although if I was given the nutritionist's abilities I would not have gone. It would have saved both me and the nuritionist's time and been helpful for their ridiculous 2 year wait list

The physiotherapist would not look at my body. I came in workout gear but was promptly told this wasn't an normal physio and that someone should have told me that. Like other appointments this did not happen. I was very clear about my injuries and chronic deconditioning issues. The PT just avoided this. After much frustration I asked what she could do for me. She said she could help my energy. What she finally explained sounded like GET. Forgetting the 'research' associated with what she explained, it absolutely no sense in my situation. Her response was incredulous and just wanted to argue about what I had experienced. Somehow my experiences aren't valid. She took every chance to try to get me to agree about some vague theory that was irrelevant to PT. My belief system must be why I have "chronic fatigue." Its all my fault definitely!

To add insult I was asked several times have I considered seeing a PT? So a PT avoids anything PT and then asks me to see a PT outside the clinic? This is what I waited 2 years for? Give me a %#^$ing break.

Want a PT that won't be a PT? Well then goto the CCDC!!! At the end of the hour long appointment she mentioned that maybe we could get to the issues I talked about in the beginning of the appointment next time. I'm not going back. At one point she even told me what the 'ideal heart rate' was for exercising with chronic illness. She repeated this a couple times. What the hell does it even mean?

The irony is if I met her in a regular PT office and I had hidden ME I bet she could have been helpful for me. This philosophy of this clinic prevented that

Hi @panckage do make sure you send your comments to MEFM Society of BC. This is valuable feedback.
 
Messages
16
I went to see the nutritionist. I came well prepared with a list of food intolerances, my diet, as well as questions all written out. Her skillset was more about macronuturient percentages. She was unable to give hints about which foods I might try. She was respectful and did the best she could. She was also honest about her skills which was the first practitioner at this place who made me feel like I could trust her. I was satisfied with this experience, although if I was given the nutritionist's abilities I would not have gone. It would have saved both me and the nuritionist's time and been helpful for their ridiculous 2 year wait list

I had the same experience with the nutritionist. She was straight forward and did everything within her skillset and was realistic about it what that was. I have no complaints about her at all but would have been more useful at the beginning of the illness, not 5 years in. She didn't have anything new or specific to suggest.

I did trust her also and can't say that for the rest. Alot of double speak. I ended up cancelling my PT appointment by then after talking with the rest so never saw them. I cancelled my last ND appointment also. He was like a fast talking used car salesman but when you point out his pitch has no substance he doesn't like that. It was disappointing.

Glad you updated us. Its important to tell your experience there even though some may view it as 'negative'. It matters to get the truth out and let others decide for themselves.
 
Messages
16
Overall you take the positive from each doc you see discard the rest. This is a free program.

Its the only program available and no other publicly funded choice. I'd like you to consider this in terms of the severely affected or people in more desperate situations.

Having to attend the welcome group needlessly cost my friend a day off work, gas, tolls, parking but more importantly left me in a crash for a month. Extra sick. That was not free and not something easily discarded.

My doctor appointment was cancelled 4 hours before, after my friend already took another day off work for it. He could not do another day and I had to scramble for a ride when the appointment came. That will be 2 years ago this fall and the last time I was able to get any kind of real sleep. The first 6 months almost no sleep at all, now it takes a ton of benedryls just for a little. That was not free either but a big cost to me. 2 years sleep!

Money wise...One of the MD tests ordered cost me 110. None of the tests the ND should be ordering are payed for. He suspected SIBO for me but couldn't order the test. Instead he guessed and encouraged I look up and undertake a treatment on my own for it. A treatment of elemental food that would cost upwards of about 1400, which I could not afford on a guess. He was upset and blamed me for not trying.

But its the non-monetary cost that makes the program a problem. I am not the first to say they have been worn down and made sicker by the program. Some of us are the only bread winners and have alot riding on getting at least some level of health back. Families, friends, GP's are looking to the clinic for answers. Not just some validation of sorts. Again these people are left wondering why no treatment. A 'take the good leave the rest' attitude is not good enough, plus can be harmful. It leaves an impression things are well when they are not. Needs go unmet. The severe can't be tossed around a program like that in my opinion. It has health costs and not free.

I'd like to see the clinic alot more open about what it is they are doing so that patients can make an informed decision about whether they will be helped and if the wait is worth what they have to offer. I waited for the clinic and had I known may have tried the US instead.

Realistically. If you need help with disability and can tolerate the CSS biopsychosocial thing then you may get helped and consider going. If its validation/counselling I think they can provide that. I could see the mildly effected possibly helped a little with diet change had they not done it before. They could easily come on to PR here for diet advice. Although they spin it as personalized its still pretty generic. I see no point in dressing it up as something its not.

I never fully returned back up to the level of illness I was at before the clinic. I'm sure when you said free you meant money but wanted to point out whats not free and that's the cost to patients health, lives and families from a program like this when they are counting on it.
 

Kati

Patient in training
Messages
5,497
I have to agree with with what @joeblow604 said.

- They are not geared to care for the more severe patients.
- They refuse to perform any kind of meaningful testing.
- It is clear that their primary objective is to place patients in some sort of group sessions.
- the unifying concept of Central Sensitivity Syndrome start from the intake appointment, they seem to want to disregard the diseases for the CSS concept. i guess it's cheaper that way.
- their patient trajectory assume that your general practitioner wants to learn about the disease and will take over once you are discharged- yes, you get discharged after 1 year. As if you were disease free.
- this is a so called 'holistic program', where a pain medicine doctor is in reality an acupuncturist and where psycho and social takes precedence over the bio and where patient education takes precedence over patient's ability to attend such sessions and to tolerate travel, sound, smell and light. Complementary medicine should not become the only option when medicine has not tried hard enough or tried at all.
- considering there is a 2 years wait list for this program, which amounts to nothing muxh at all is the biggest tragedy. I hope it changes. The stakeholders, the patients, deserve much better.

And yes, patients get PTSD from how they've been treated there. .
 
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Messages
16
Thinking further and to add to my previous comment regarding harms and cost to patients health. I knew another severe patient whom attended the clinic. She wasn't helped despite her efforts. She felt misunderstood and her condition not recognized as serious. It was very stressful and combative for her. It effected her after she left. 1 - 2 years or so after discharge she passed away. Its a stretch to say the clinics inaction caused her death but I think is fair to say it contributed. I often wonder had they really investigated, tried to work through the symptoms, offered treatments and as @Kati mentioned stop discharging very sick patients, would she be alive today. I don't know. I know she deserved better. We all deserve better.