I’ve just received an email from the CFS Discovery Clinic in Melbourne advising that Dr Lewis is retiring and the clinic is closing. All of his upcoming appointments are cancelled.
(not being up on Australian doctors/clinics I have no idea if this is a bad thing i.e. if he was any good and liked/respected/needed, or if it's a good thing i.e. if he was unhelpful/BPS/etc. - a hug seems to cover both bases)
Nooooooo. I've heard quite a few Australian researchers mention how essential he was with providing access to patient data and samples.
I thought he did have another doctor working with him. I never went to him, but I think he was a caring doctor with a lot of experience with ME/CFS patients. I think, like most ME/CFS specialists, he had a toolkit that included quite a few approaches that didn't have much of an evidence-base but were provided with good intent. His departure will leave a lot of people with ME without knowledgeable care and, as you say @wigglethemouse, make it harder for researchers to get competently diagnosed patients for studies.
From the front page of the website: And The real question is there going to be some sort of transition plan for current patients?
the clinic is still connecting their (competently diagnosed) patients with researchers - i'm hoping that will continue in the short term. maybe the proposed biobank might have a dual role - to hold biological specimens - and to hold contact details for 'competently diagnosed' patients who are willing and able to be involved in future research. [the Mason Foundation grant is for a biobank and/or a patient registry - it depends on which applications are chosen]
Dear Moderator You changed the heading of my thread to indicate this clinic is closing in April 2019. This is not actually correct so I have edited it. Here is what the email says: “11/4/2019 Dear Patient, The time has come for Dr Lewis to finally retire. He has been serving the ME/CFS community for over 30 years in his role as a GP and involved with the ME/CFS Discovery Research Network (MDRN). It is with regret that we cancel all of Dr Lewis’ upcoming appointments and unfortunately no further appointments can be made. Plans are being put in place at the moment for the closure of the clinic. Regrettably these plans have had to be brought forward and we understand the challenges this will cause. Dr Andrew McDonald and Dr Joel Ten are concluding on 15thMay 2019 and in the interim will only provide ongoing therapy and will not be able to arrange for further investigations. We are sorry for any inconvenience this will cause. With Regret, CFS Discovery”
He has tried for at least 10 years to find a doctor willing to learn and replace him. Several have come and gone in that time but no one has taken on the challenge to continue the clinic. Apparently his own poor health is the reason he cannot now continue
@sea or @AndyPandy - Do you happen to know what challenges he has faced with finding a doc to take it on? In the US, one big issue, aside from the attitudinal issue, is the lack of insurance reimbursement for the time it takes to manage an ME patient.
I don’t know what the issues have been, but I do know in general that the attitude towards ME/CFS in Australia hasn’t helped. Australia doesn’t have an insurance system for seeing doctors outside of hospital care. There is a minimal government rebate which leaves a huge gap for anything longer than a standard 5-10 minute consultation. Any doctors who devote large amounts of time to individual appointments charge a large fee so only patients who can afford that can see them.