MECongres in Amsterdam 26 Sept 2015

[mango]

There was a ME congress in Amsterdam 26 Sept 2015
http://www.mecongres.nl/

Here are some tweets that I found interesting:

Anil van der Zee: @MEcvsVereniging Thank u 4 the #MEcongres In Amsterdam 2day. Was the 1st biomedical congress ever, heard that it was an amazing succes #pwme
Source: https://twitter.com/AnilvanderZee/status/647853680939696128

Maija Haavisto https://twitter.com/DiamonDie:

At AMC hospital for the #MECongres. (Huge hospital, whoa!) Cardiologist, prof. F.C. Visser just finished his talk. Byron Hyde next, yay.

Prof F.C. Visser: #mecfs usually has a deteriorating course instead of stable. Yep. Could understand most of the Dutch talk. #MECongres

Byron Hyde: This is a polio-like disease. It has two phases like polio. Deregulation of the cerebral cortex. #MECongres#mecfs

Hyde: "If you haven't had a SPECT scan [of the brain] you're doing yourself injustice." Yes, the society does us injustice. #MEcongres

Hyde: "I saw seven 'ME/CFS' patients here in the last two days, seven different diagnoses (e.g. EDS), only one actually had ME". #MEcongres

Hyde: Stomach biopsy is very important, because you see the enterovirus infection so clearly there. #MECongres

Hyde: Best treatment for #mecfs persons is to get them on disability to avoid stress that causes them massive damage!!! #MECongres

Hyde: I earn my income from real estate, so I can see #mecfs patients for 1.5 days and actually lose money on it. #MEcongres

Hyde lists many tests for exclusion e.g. ECHO cardiogram, carotid/transcranial doppler, clotting factors, thyroid ultrasound. #MEcongres

Hyde: If thyroid volume on ultrasound is too low and patient has never taken thyroid meds, they have hypo, no matter blood tests. #MEcongres

Hyde: ME clinics MUST be psychiatrist free areas. Have sometimes caused more injury to the patients than the illness. #mecfs#MECongres

Hyde talked about a Swedish doctor who studied ME back in the late 1800s and early 1900s. Dr. Ivar Wickman. Very interesting! #MECongres

I gave Byron Hyde my #mecfs treatment book. Very excited. :-> I have two of his books. #MECongres

UK neuropsychiatrist Neil Harrison speaks about inflammation induced sickness behavior. TNF-alpha, IL-6 and IFN-alpha. #MECongres

Harrison: Inflammation induced insula activity predicts fatigue. Neuroinflammation shows up in PET, fMRI, qMT. #MECongres

Byron Hyde believes ME is only caused by enteroviruses, period. Neil Harrison thinks many different infectious agents causative. #MECongres

Harrison: After infection/IFN people who are still sick (fatigue etc) no longer elevated cytokines. Activated microglia? #MECongres

My question: What do you think about LDN to block TLR-4 and microglial activation? Harrison didn't really have an answer. #MECongres

Belgian neuropsychiatrist A.M. Uyttersprot discussing Dx. Not so interesting, will close my laptop to save battery. Back in 1.5h. #MECongres

Live tweeting from #MECongres resumes. Cardiologist Visser discussing OI and POTS. Tilt table test, cerebral blood flow etc.

Visser: Near infrared spectroscopy (NIRS) shows huge arterial and venous oxygen saturation drop in #mecfs during tilt table test. #MECongres

Visser: OI has tons of possible symptoms. E.g. nausea, shoulder and neck pain, dyspnea, exercise intolerance and blurry vision. #MECongres

(Finnish neuro maagzine said POTS patients often have shoulder pain because they clench their shoulders to improve circulation.) #MECongres

Visser uses clonidine, midodrine and fludrocortisone for OI. Salt and water intake also important, of course. #MECongres

Visser: 3 types POTS: 1. hyperadrenergic, 2. venous pooling/hypovolemic, 3. autonomic small fiber neuropathy. #MECongres

Visser: Treatments for different POTS types: 1. propranolol, clonidine. 2. fludrocortisone. 3. midodrine, pyridostigmine. #MECongres

In people with #mecfs tilt table significantly lowers pain threshold, in healthy controls little effect <- central sensitization. #MECongres

Visser believes e.g. acupuncture, LDN, cannabis, fentanyl, neuropathy pain drugs (antiepileptics, tricylics) useful for pain. #MECongres

A woman asking a question from the audience was moved to tears speaking about her daughter's severe #mecfs. #MECongress

Byron Hyde's second talk starting. He begins by greatly praising the presentations of Dr. Visser and Dr. Harrison. #MECongres

Hyde talks about the current enterovirus epidemic which has caused some cases of paralysis -> more research into enteroviruses. #MECongres

Hyde talks about EDS, especially EDS3. He's "diagnosing" people in the audience. (But all #mecfs patients have these problems.) #MECongres

Hyde talks about aerotoxic syndrome, pilots and flight attendants affected by a neurotoxin used in plane motors. #MECongres

Hyde: Case study: woman diagnosed as CFS in top US hospital, 6 weeks there. Reality: carotid arteries almost completely occluded. #MECongres

Hyde: Physical examination should never last less than 1 hour. #MECongres

Hyde: Don't stop testing after 1 diagnosis. I've had patients with over 20 pathologies. #MECongres (Yes!)

Hyde: 47 doctors had missed that a boy had massively swollen tonsils, because no one had told him to say "aaah". #MECongres

Nigel Speight starting his talk about pediatric #mecfs and severe ME. His youngest patient has been 18 months. #MECongres

My brain and laptop battery are both shutting down, so live tweets may cease, I try to tweet afterwards at home. #MECongres

Home from #MECongres. Great conference! Well organized, great speakers (Byron Hyde was amazing!), super nice people (e.g. @Gooische_Vrouw).

I could understand two of the three Dutch presentations well, despite almost falling asleep... So a few more tweets will follow. #MECongres

In Speight's experience children with #mecfs often get well even if they're severely ill (e.g. tubefed and stuff). #MECongres

Many kids get better without any treatment, as long as you keep psychs and physios away from them. IVIG helpful for severely ill. #MECongres

Dietitian C. Tobback talked about food intolerances (and a bit about deficiencies). Esp. FODMAP and histamine intolerances. #MECongres

Tobback finds histamine intolerance common in #mecfs, symptoms can be severe and elicited by very small amounts of food. #MECongres

Magnesium and vitamin B6 (especially in active form of P-5-P) can help h. intolerance. Stress, PMS make intolerances worse. #MECongres

Source: https://twitter.com/DiamonDie

 

[Sidereal]

Sounds pretty hit and miss.

 

[Effi]

I found a report of the congress on the website of the organising me/cfs association, courtesy of their chairman Rob Wijbenga (Dutch original here: http://www.me-cvsvereniging.nl/verslag-me-congres) I made a passable translation, together with my faithful helper 'Google Translate'.

There might not be that much new information for us, well-informed patients. But it seems that there were a lot of medical professionals present (about 80!), and most importantly GP's too. They are traditionally the first doctor new patients go to see, so it is of the utmost importance that they are well informed about the biomedical nature of me/cfs. Apparently the organizers (mostly patients themselves!) had to put in a lot of work to get the conference accredited specifically for GP's (something about credit points for compulsory training), and they succeeded, so I think they did a great job in terms of getting their target audience to attend.

(Btw/Fiy, the Belgian doctor Annemie Uyttersprot is an me/cfs patient herself.)

ME Congress Amsterdam (the Netherlands)


Saturday, September 26, 2015


The ME / CFS Association organized the first international ME conference in the Netherlands in a room of the AMC hospital in Amsterdam and it was a resounding success. The fact that this event was organized by no more than a handful of moderately to severely ill patients who worked on it for months has certainly, given their condition, been an act of magic.


Especially obtaining accreditation for various medical professionals, including general practitioners, and making a magnificent congress, gave them a lot of headaches and worries. The outcome was very good: in total, the conference was attended by about 160 people, half of them coming from the medical world.


The speakers were very interesting too. Two of them have been broadcast in the past few years in webinars by the ME / CFS Association within their project Science for Patients (Prof. Frans Visser: https://www.youtube.com/playlist?list=PLsQ0FZQ_5JXSXLFw9wrexhD_ka-SqhoGa and Dr. Nigel Speight : https://www.youtube.com/playlist?list=PLsQ0FZQ_5JXTGcEd5-mNy2m1EJml05VGB).


Prof. Frans Visser was master of ceremonies and opened the day with the first of his two lectures. He explained what ME, CFS and / or SEID actually are. He gave an overview of the status of the definition(s), the prevalence, the disease and its symptoms and (possibly) potential therapies. He gave a lot of information from the IOM report published last January and also from a primer for clinicians that appeared a few months later. The immunological damage in patients is extensive as well as the neuro-hormonal disturbances such as the functioning of the hypothalamic-pituitary-adrenal axis, which is not so much an indication of a disturbance of the adrenal gland, but more of the hypothalamus and the pituitary gland. The only therapy in sight which could be promising in the future, is Rituximab, about which a large follow-up study in Norway is on its way. GET and CBT appear to be counterproductive in many cases.


Dr. Byron Hyde from Ottawa, Canada then gave the first of his two lectures. In his first lecture he outlined a clear picture of what ME is and in his second lecture he looked more closely at what CFS is. Byron Hyde is one of the very few clinicians who holds a very sharp distinction between ME and CFS and is a fascinating speaker who has also studied the outbreaks of ME during the late nineteenth and throughout the twentieth century. The common thread in his view is that the presentation of ME is very similar to the presentation of polio epidemics and that the different phases of ME correspond to the different stages of polio. Enteroviruses and genetic factors usually lay at the root of both diseases. He gave a clear description of the groups of symptoms associated with the various phases of ME. Two necessary markers for a clear diagnosis are a chronic enteroviral infection of the gastrointestinal tract and chronic microvascular damage to the cortex, limbic system and basal ganglia. It is worth noting here that in the autopsy of Sophia Mirza, who was the first patient officially diagnosed with ME, inflammation was found in the basal ganglia. Only the tip of the protein coat of a virus plays a major role: as it can continuously mutate quickly, the immune system must continuously adapt so fast, that it cannot keep up with the changes. An endoscopy and a SPECT scan can be used as 'evidence' for the diagnosis of ME.


At the congress dr. Hyde provided a free English reader with all the information and more that he put forward during his lectures (ed: the written booklet, provided specifically for the ME congress, is available here). It is also worth mentioning that the day before the conference seven webinars from him were included in the Science for Patients project. These will be broadcast with Dutch subtitling in the course of 2016.


After Dr. Hyde came the British neuropsychiatrist Dr. Neil Harrison. The topic of his talk was the communication between the immune system and the brain, and consequently the relation to fatigue caused by inflammation, both physically and mentally. He outlined the inflammation-induced sickness behavior, and showed slides in MRIs of exhaustion caused by inflammation. Pro-inflammatory cytokines such as IFN-alpha cause sickness behavior, and play a role in, among other things: anorexia, apathy, anhedonia, exhaustion, reduced social and sexual activity, worrying, anxiety and depression. He showed imaging of how the signals from the immune system are transferred to the brain, where among other things, the activity of the insula caused by inflammation are predictive of the exhaustion. What needs to be researched further is whether and how after the disappearance of the inflammation structural brain damage still possibly plays a role in maintaining the disease, and what the consequences are of a persistent post-inflammatory IFN-fatigue and post-viral fatigue.


Also, the day before the congress seven webinars about Dr. Harrison were included in the Science for Patients project and these will also be broadcast in the course of 2016 subtitled by the ME / CFS Society.


The Belgian neuropsychiatrist Dr. Uyttersprot then gave an overview of how in Belgium and the Netherlands patients still get the ‘incorrect’ label CFS. She gave an overview of the different criteria published from 1957 to the ICC in 2011 and the IOM in 2015, where she went into detail on the ICC and SEID criteria. The diagnosis of ME is still a diagnosis of exclusion because there are no clear biomarkers yet. She mentioned the ongoing studies of Mady Hornig and Ian Lipkin about immune biomarkers in the blood plasma of a very large cohort of patients and controls, and gave a clear overview of the similarities of symptoms in ME and other neurological disorders such as Parkinson's, autism, whiplash, Meniere's, migraines and ALS. She discussed the various systems that are disturbed by a persistent immune activation and NK cell disruption of the immune system, which she in turn believes to be due to the combination of a genetic susceptibility, and a trigger. Governments need to be fully aware of the seriousness of the issues surrounding ME. Advances in scientific findings should be able to break the power of insurers and the promotion of the illness as a psychological syndrome.


Then came a very animated and tasty quality lunch that could have lasted all day because it allowed for extensive networking, and showed the informal and low-threshold nature of the conference.

After lunch Prof. Visser opened the afternoon session with a presentation on POTS. He does a lot of research into POTS through exertion tests and the tilt table test and gave everyone some very useful pointers about how to minimize the effects of POTS, such as drinking plenty of water and salt intake, muscle tensing, wearing compression garments and possibly taking drugs like clonidine, fludrotocortison and midodrine. POTS is a fairly common phenomenon in ME patients, but also in other diseases such as MS, FM, Lyme and hyperventilation, and is therefore not a marker for ME. Finally, he discussed the incidence and nature of pain in ME.


Dr. Byron Hyde outlined in his second lecture how the term CFS originated and came into fashion, and how meaningless it actually is. EBV was branded as epidemic by the CDC, fully linked to ME although in 1988 they named the illness CFS. While every medical student knows that EBV cannot be epidemic because of the incubation period of 40 days. Dr. Hyde talked about four very clear cases from his own practice where patients had seen dozens of doctors and not received the correct diagnosis, although it was very obvious what they had. Virtually all of the thousands of ME-patients that he has seen, had been diagnosed in an unlikely short time, often in a consultation of five minutes, while finding the indications for a sound diagnosis of ME requires a minimum of two hours. Ehlers-Danlos, a condition that a number of patients he has seen appeared to suffer from, can be diagnosed by simple physical characteristics. For illustration he made all listeners make the easy physical movements used for diagnosis.


On the two days before the congress Dr. Hyde saw seven severe patients who were at that moment very desperate, after having tried all possible treatments without success. The consultations happened in the hotel where he was staying, and where the recordings of his and Dr Harrison’s lectures also took place. Dr Hyde insisted to give a free consultation to the less financially well-off patients, even though some of them insisted on paying the consultation fee anyway. One of these patients was diagnosed with EDS type 3, which was fully in line with the findings of the patient himself.


The retired British pediatrician Dr. Nigel Speight came after him with his talk about ME in children and the challenges he encountered with severe cases of CFS for research and clinical practice. During his lecture, he talked about his own experience with patients. He saw more than 650 children with ME in Britain, and was personally involved in more than forty cases of threat or court order ruled placement, either in foster care or in the worst cases, admission to psychiatric wards or institutions. Then he discussed the various possible types of therapy: immunoglobulin which he sometimes administered with significant results, and about which, in his opinion, a lot more research should be done; GET which only may produce some beneficial effect if it is a kind of GET that is similar to pacing, because otherwise GET causes more harm than benefits; and finally CBT, which comes in two forms: a mild and an aggressive form. If CBT and GET fail to give results, the parents and / or the child typically get blamed and get burdened with psychiatric diagnoses such as conversion disorder, reversal disorder and Munchausen-by-proxy, and parents are even accused of child abuse. In the most severe cases of ME in children he said: "we stare blindfolded in the dark”. In the severe cases he witnessed, five of the seven patients dependend on tube feeding. He gave an overview of standard statements of doctors in response to ME in children, such as "there is nothing wrong if all your tests are normal” and “children do not get ME”. Dr. Speight finished with a few cases of very severe ME, like the German 14-year-old girl Joanne, who is finally with her mother again, partly thanks to contributions from him and financial contributions from the fund Save4Children, after eighteen years of psychiatric admission and "treatment" by psychiatrists.


The last lecture was by Christine Tobback, who holds practice in the practice of Prof. De Meirleir in Vilvoorde, near Brussels. She gave an overview of her professional and practical knowledge: the influence of nutrition on ME symptoms and possible common food intolerances. She gave an overview of the dietary factors that may play a role, IgE and IgG, fructose and lactose, and vitamin and mineral deficiencies. She discussed the various organs and systems that are involved in the metabolism and the various intolerances, which are fully individual for each patient, although they also commonly appear in subgroups of patients. She also discussed the mental complaints that may arise from the effect of histamine. She talked extensively about the biggest immune system of the body, i.e. the gut, and the possible effects of an elimination diet and what we can learn from it.


It was a very versatile conference, focusing on clinical practice. Afterwards the organizers and their helpful volunteers enjoyed a more than a well-deserved dinner with the speakers. Everyone unanimously expressed the wish for an annual of biannual follow-up of this conference.