Is Anyone Else Scared of Rituxan?

[SaraEngland]

Giving Immunoglobulin as well as rituximab would be very expensive and I would not mix the two until we have clear evidence that rituximab actually works - or indeed that immunoglobulin works. IM and IV immunoglobulin should have much the same effect.

Thank you for your answer. I'm only thinking from the perspective of a sick patient. Money is not an issue.

Rituximab and continous use of IVIG/subcut GG is not contradicted in any way? I was thinking of doing both, then reducing GG gradually when (hopefully) I am in remission.

I'm willing to do everything to be healthy as soon as possible. I'll try anything that sounds promising. I am more skeptical to cyclophosphamide, but that won't be an option until gamma globulins, RTX and perhaps Valcyte is tried.

 

[Jonathan Edwards]

Thank you for your answer. I'm only thinking from the perspective of a sick patient. Money is not an issue.

Rituximab and continous use of IVIG/subcut GG is not contradicted in any way? I was thinking of doing both, then reducing GG gradually when (hopefully) I am in remission.

I'm willing to do everything to be healthy as soon as possible. I'll try anything that sounds promising. I am more skeptical to cyclophosphamide, but that won't be an option until gamma globulins, RTX and perhaps Valcyte is tried.

My only caution would be that if you find a physician prepared to give you both you are likely to have found a physician who is prepared to give anything to earn some cash and who has no idea what they are doing - particularly in terms of dosage scheduling. Dosage scheduling for these treatments is very complex and very few physicians understand the issues involved. Dr Fluge and Dr Mella do, I am not sure who else. Nobody has any idea what dosage schedule should be used for giving both treatments together so I would be very sceptical about anyone offering it outside a proper trial. The wrong schedule might make people resistant to rituximab with the result that it will not work another time.

 

[SaraEngland]

The dosing schedule would be the same as used in the phase III study at Haukeland. The doctor is a oncologist. He hasn't suggested gammaglobulines. I was wondering if I should ask him if one could add into the mix if it is not harmfull.

 

[halcyon]

The B-cell lymphopenia may have been a complication of the Rituximab, but it may have happened roughly 12 years after the infusions, as far as I can work out;

The case is a bit hard to interpret based on the information provided, but this is what it seems happened and they state outright that they believe the rituximab caused the lymphopenia and secondary hypogammaglobulinemia. It's a bit scary that it could take that long to manifest. How many years after rituximab treatment are patients normally followed up on with these immune tests I wonder. Hopefully this sort of delayed reaction is not a common occurrence.

 

[Jonathan Edwards]

The dosing schedule would be the same as used in the phase III study at Haukeland. The doctor is a oncologist. He hasn't suggested gammaglobulines. I was wondering if I should ask him if one could add into the mix if it is not harmfull.

Generally speaking oncologists have rather little understanding of how rituximab behaves in autoimmune disease - Oystein Fluge himself had a very steep learning curve during the early studies. The phase III schedule is a trial schedule. That does not make it the logical schedule for an individual case. These things are much more complicated than people realise. If you have both treatments and improve you will not know which treatment made the difference, if either so it would be unclear which to repeat if necessary. I am all in favour of further trials that are carefully monitored, reported and standardised but I am very uncertain about the wisdom of individual patients being treated by people who are not closely involved in the development process.

 

[Jonathan Edwards]

The case is a bit hard to interpret based on the information provided, but this is what it seems happened and they state outright that they believe the rituximab caused the lymphopenia and secondary hypogammaglobulinemia. It's a bit scary that it could take that long to manifest. How many years after rituximab treatment are patients normally followed up on with these immune tests I wonder. Hopefully this sort of delayed reaction is not a common occurrence.

Fatal Coxsackie meningoencephalitis in a patient with B-cell lymphopenia and hypogammaglobulinemia following rituximab therapy.
http://forums.phoenixrising.me/inde...e-scared-of-rituxan.37697/page-14#post-607613

A few extra-ordinary things need to be noted about this case.

Firstly, the patient had an autoimmune disease of the blood. I don't know if this is relevant, but it a specific circumstance.

Secondly, and I don't know if this would make any difference, but the patient was given many doses of Rituximab (8 doses during a 10 month period):

But, most notably, it was after the age of 15 (exact timing isn't specified) that she received Ritiximab, after which "she did well until 27 years of age". It was age 27 years, 12 years after the Riuximab, that she was hospitalised.

By this time, she had developed "marked hypogammaglobulinemia with impaired antibody response and profound B-cell lymphopenia."

If there was an issue with B-cells 12 years after treatment with Rituximab, this raises the question of whether there may have been a deeper and complex underlying immunological issue causing problems, rather than a simple adverse reaction to Rituximab. The B-cell lymphopenia may have been a complication of the Rituximab, but it may have happened roughly 12 years after the infusions, as far as I can work out; The paper doesn't indicate whether her B-cell levels ever returned to normal after the Rituximab, but her clinicians had roughly 12 years during which they could have checked and addressed the issue of B-cells and antibody response not returning to normal.

Is it normal not to check that B-cell levels are returning to normal, after treatment with Rituximab? And to monitor for other blood counts?

I think this may illustrate the point I was making to @SaraEngland.
It looks to me as if this was one of the maybe ~2% of patients treated for autoimmunity whose B cells go away with rituximab and do not come back for many years. We identified this group because every patient we treated with rituximab we monitored B cells every 2 months year in year out until we knew they were back. Unfortunately some physicians are treating with rituximab and not bothering to record B cell return. In this case the patient seems to have been 'discovered' to be B lymphopenic 10 years on. The advice given in discussion should not be needed.

The dosing is probably unremarkable in fact. The oncological regime of 4 doses is equivalent to the rheumatological regime of 2 double doses. It seems they tried two courses, which is fair for a refractory problem.

The fact that this patient was 15 may be important. Hypogammaglobulinemia is known to be a much bigger problem in children. It is also possibly important that this patient had a haematological autoimmune disease. The return of mature B cells is different in some of these diseases - in our experience particularly in thrombotic thrombocytopenic purpura.

Finally, I think the splenectomy adds an important extra risk factor. In this case it would have been justified if there was a failure to respond to rituximab, but I think it would have been a hard decision if it had been known that B cells had not returned.

This is an extremely rare case scenario and quite atypical. I does illustrate the potential dangers of these treatments, however, and shows why one should not engage in new schedules without extreme care I think.

 

[SaraEngland]

Thank you again, @Jonathan Edwards. Soon everyone on PR will think like a real scientist

Is the general rule to do frequent CD19+ tests whenever one is finished with a dosing schedule with RTX? That would be after one year if one have a total of 6 infusions.

Norwegian daily Aftenposten: http://www.aftenposten.no/100Sport/...-Jeg-har-vart-veldig_-veldig-syk-491763_1.snd

Chess talent Marianne (22) has had ME for five years: - I have been very, very sickNow she is finally on the way back. - This year's best news! believes Hans Olav Lahlum.

Great talent Marianne Wold Haug (22) was so ill that she could not play chess for five years. Now she is finally beginning to recover completely.She was considered one the greatest chess talent on the women's side in Norway, was on the national team and would play his first Olympics at the age of 17 years.

Marianne could be Norway's best female chess player today, believes historian, author and chess profile Hans Olav Lahlum.But the life of Marianne Wold Haug was instead turned completely upside down.- It happened quite suddenly, she tells Aftenposten.It all started when she got a severe infection in December 2009, and for very many antibiotics was immune system completely incapacitated.

She was diagnosed with ME (Chronic Fatigue Syndrome) and was forced to stop at the Norwegian College of Elite Sport (NTG) in Bærum, where she had gone the high school two steps under sjakkongen Magnus Carlsen. Marianne was so low that she had not the energy to play chess.Taught by Carlsen on TV- Every time I was about to get me again, I just got new infections and became ill again. I've been very, very sick, says 22-year-old.She played a little chess those times best friends Ellen and Ingrid Carlsen (sisters Magnus Carlsen) came to visit, but otherwise was almost no chess training. Except that she saw Magnus Carlsen chess parties on TV, something she says she learned a lot from.

But at the beginning of 2015 - after five hellish years - did she finally a medicine which she says has worked for her. The shape is gradually becoming better and better. She finally dares to say it: "I'm trying to be healthy!"- There have been some very tough years, but now I'm just so happy that it goes so well. It feels extra good to feel good when you've had it so tough, says Haug says that the chance of recurrence is very small.- The last month I have been almost completely healthy. I am so happy to be able to do, see and experience it all again. It is absolutely fantastic. There are many who ask me if I've been sick and so on, but I think not so much of it now. I'm just so happy to be healthy again, she says.Was touched by the welcome

At the beginning of February, she participated in her first chess tournament since she became ill five years ago. It was a chess comeback of high class. 22-year old finished 2nd after victory in five of six parties (albeit one on walk-over), and she lost only against the international champion - and NRK specialist - Atle Green.- It was fantastic to play again, she says.- But the very, very best is how kind everyone in the community is against me. It is quite touching really. It was not so important whether I won or not, although I still have a strong competitive instinct. There was just so much fun to be back and playing chess again. When you've been as sick as what I have been, putting you even more appreciative of absolutely everything, there is the advantage, she says.Hans Olav Lahlum known Haug long time. He was ecstatic to hear that 22-year-old is finally fit to play chess again. In May 2013 was Lahlum, together with the VG journalist Mats A. Andersen, record holder of the "world's longest interview". For there he received a fee of 10,000 dollars of VG. The money, he chose to give to the medical research MEandYou, conducting research on ME. I can say that Marianne's story is the main reason why I chose to do it, although I also know several people who have struggled with ME, tells Lahlum.

Lahlum: - This year's best news- When it comes to personal tragedies among people I'm close, she is one of them I've been most afraid of. She was so very talented and while such a positive young man when she suddenly fell ill. That she is now almost fully recovered, is the year's top news and the best friend I've got news for several years. It's almost indescribable, says Lahlum.The life of Marianne is finally beginning to normalize, and she has already set new targets: Now she'll get the team to the Olympic Games in Baku in 2016.- Yeah, I feel like it. I go up slightly in the rating, it is possible. So I plan to play a lot of tournaments to come, says Haug.NRK chess expert Atle Green, who was the only one who managed to outwit 22-year-old event at Anytown earlier in February, believes she can get by on the Olympic team.Will be a doctor and help others with ME- It is not so very far forward. Chess is a bit like riding a bike or swimming; forgetting is not. I would think that she has the same level in now, as before she became ill. She compensates lack of training that she is now more mature and know themselves and their limitations better. She also seemed incredibly interested and had a passion for chess. She seems to have the right attitude, says Green, adding:- She has the potential to be the best female player in Norway.But chess is matter primarily a hobby for Marianne Wold Haug. For she takes up subjects like candidate so she can achieve her dream of becoming a doctor so she can help others with ME.- I feel like I've been incredibly lucky, but I see how much mishandling some others get. I hope that everyone who has ME can get help so I've got, and I wanted to do research on medicine or engage in health policy. I would like to help, says Haug.

Facts:What is ME?ME / chronic fatigue syndrome characterized by unexplained fatigue, with a range of additional symptoms such as pain, loss of concentration and sensitivity to sensory input.It affects very differently, from mild (at least 50% reduced activity level) to very severe (bedridden and in need of care). Also duration varies greatly.

What is the cause of ME?There are several theories about the causes of ME. Different communities have disagreed about ME is primarily psychological or physical. Often triggered the disease by an infection, especially known is mononucleosis / glandular fever. Stressful life events can trigger ME.One theory is that CFS may be related to weaknesses in the immune system.

Who gets ME?Women are affected more often than men, unless the reason is clear. Currently it is unclear which genes predispose to ME, but this research is now. No one knows how many people have the disease in Norway. One estimate is between 10,000 and 20,000

How are ME?There is currently no treatment that can cure evidenced ME.Various forms of exercise therapy, cognitive therapy, antibiotics and the mental training Lightning Process is used to help ME patients. But the documentation of the methods are controversial.

Source: National expertise service for CFS / ME, Directorate of Health, Haukeland US

The patient says she took RTX, and GG at the same time.

This is why I thought of GG+RTX and the same time. Not sure if it is safe, or whether my doctor agrees. I am just trying to speed up anything I can if it is considered safe. I thought I could add GG to the mix, and slowly removing it after RTX hopefully kicks in.

 

[Jonathan Edwards]

Thank you again, @Jonathan Edwards. Soon everyone on PR will think like a real scientist

Is the general rule to do frequent CD19+ tests whenever one is finished with a dosing schedule with RTX? That would be after one year if one have a total of 6 infusions.

Norwegian daily Aftenposten: http://www.aftenposten.no/100Sport/...-Jeg-har-vart-veldig_-veldig-syk-491763_1.snd
The patient says she took RTX, and GG at the same time.

This is why I thought of GG+RTX and the same time. Not sure if it is safe, or whether my doctor agrees. I am just trying to speed up anything I can if it is considered safe. I thought I could add GG to the mix, and slowly removing it after RTX hopefully kicks in.

There is no general rule about frequency of CD19 counts - it depends on the schedule. The six doses are what are being tested at the moment but that does not necessarily mean that that is the sensible thing to have. It is an entirely experimental plan from Dr Fluge and Mella at present.

 

[Snow Leopard]

There is no general rule about frequency of CD19 counts - it depends on the schedule. The six doses are what are being tested at the moment but that does not necessarily mean that that is the sensible thing to have. It is an entirely experimental plan from Dr Fluge and Mella at present.

What does this mean in the big picture though, i.e. if the trial is successful, and we are seeking approval/subsidies for the drug in patients, surely the dosage that was successful in the RCT(s) would be the dosage that is approved? Or is that not how it works?

 

[Jonathan Edwards]

What does this mean in the big picture though, i.e. if the trial is successful, and we are seeking approval/subsidies for the drug in patients, surely the dosage that was successful in the RCT(s) would be the dosage that is approved? Or is that not how it works?

The trial has not reported yet. The evidence we have so far relates only to responses to a single course plus some documentation of open label extension. My basic point is that I would be very wary of anyone getting treatment 'off the shelf' from a physician just following what is currently under trial. Things are so uncertain and the potential risks so considerable that I see all sorts of things going wrong. Even when we licensed rituximab for RA physicians sticking to what they thought was the schedule rather than using the drug intelligently on the basis of what was really known and not known led to a lot of unnecessary unwanted effects. Drugs like this need to be used by someone with an expert understanding of what they do. You do not just buy a heavy goods vehicle and read the instruction manual, you get trained in how to use it safely. Knowing how to drive a car is not enough. These drugs are heavy goods vehicles.

 

[Kati]

i haven't read the whole thread. But here is what I would like to say.

Patients should have a right to compassionate access to treatment when there is no interest nor funding to actually perform evidence-based research and clinical trials. i am speaking about government policies. Perhaps aside from Norway, no countries has expressed interest to have things changed.

We knew w that evidence based treatments, and FDA approved treatments are likely to be years away.

We know that most patient's quality of of life is poor to appalling.

Some patients,not everybody, desire access to medical treatments and do not appreciate being told to cope or learning to live with it or to see a naturopath or to be prescribed anti-depressants for this disease.

For these folks, access to treatment is important.

From my professional experience, cancer patients are given access to compassionate programs which grant them access to off-label drugs (in my socialized health care system). The rationale to that is they are fighting for their lives.

We patients with ME are fighting for our lives too. This is a living death! We need help today. We need treatment plans and when it's not working, we need another one. This gives the patients hope, while clinical trials are being planned and while governments are pondering to which group they will give out their 32 billions health research budget (and do we ever know it will not change anytime soon)

Each one of us needs to make a decision as of what risk they will tolerate for their treatment. Very few treatments have no risk at all. The chance of benefits from doing nothing at all is also very slim. There is no right of wrong answer for what each individual chooses for themselves. You would hope that each patients can be supported in their choices and that physicians offer a wide array choices. This is called practicing medicine. A (for the most part) lost art.

 

[Jonathan Edwards]

i haven't read the whole thread. But here is what I would like to say.

Patients should have a right to compassionate access to treatment when there is no interest nor funding to actually perform evidence-based research and clinical trials. i am speaking about government policies. Perhaps aside from Norway, no countries has expressed interest to have things changed.

We knew w that evidence based treatments, and FDA approved treatments are likely to be years away.

We know that most patient's quality of of life is poor to appalling.

Some patients,not everybody, desire access to medical treatments and do not appreciate being told to cope or learning to live with it or to see a naturopath or to be prescribed anti-depressants for this disease.

For these folks, access to treatment is important.

From my professional experience, cancer patients are given access to compassionate programs which grant them access to off-label drugs (in my socialized health care system). The rationale to that is they are fighting for their lives.

We patients with ME are fighting for our lives too. This is a living death! We need help today. We need treatment plans and when it's not working, we need another one. This gives the patients hope, while clinical trials are being planned and while governments are pondering to which group they will give out their 32 billions health research budget (and do we ever know it will not change anytime soon)

Each one of us needs to make a decision as of what risk they will tolerate for their treatment. Very few treatments have no risk at all. The chance of benefits from doing nothing at all is also very slim. There is no right of wrong answer for what each individual chooses for themselves. You would hope that each patients can be supported in their choices and that physicians offer a wide array choices. This is called practicing medicine. A (for the most part) lost art.

Dear Kati,
I agree with all of that except perhaps the last two sentences. What we are trying to lose is the art of bullshit - which is what all medicine was until about 1970. The art of medicine we need now is having physicians who actually understand what their treatments do and using them intelligently. So I entirely agree with compassionate usage. What I am warning against is the idea that we have some good reason to pick a treatment off the peg - like say rituximab in a particular schedule - just because it is in trials. That is in a sense exactly what you are complaining about - working to recipes for no good reason. The current discussion was around combining rituximab with Immunoglobulin and I do not think anything can be said about the advisability of that - what is needed - very much as you suggest - is a physician who really knows what the arguments are and weighs everything up.

Oncologists tend to be very good at being intelligent with oncology drugs. They are assiduous about learning how their drugs work and they are good at planning one off treatments because they are often faced with people who fail standard schedules. Rheumatologists and other clinical immunologists tend mostly to be pretty ignorant about what their drugs do and are in comparison closer to witch doctors. So oncologists may have the right sort of mindset for treating something new in a new way but the problem is that a lot of them have little or no knowledge of autoimmune mechanisms. The Norwegians are exceptional - partly because they are very honest and humble about things.

So my reservations are not about compassionate treatment, they are about whether or not anyone is likely to find a physician who will know enough about the problem not to pour in a load of potentially risky treatment in a way that is never going to be any use or may be contraindicated for some reason they have not looked for.

 

[Kati]

Agreed, especially the last paragraph which resonnate with me.

locally I am facing tremendous amount of red tape, stigma, lack of knowledge, (lack of time for dr to read litterature, even if I provide it) lack of interest, lack of medical specialty willing to take care of pts with ME and a clinic which is not offering real medical treamtents.

It is immensly frustrating, and even more maddening when I hear about fellow patients trying to get through the system and it's not only not working for them, they are further harmed.

These giant hurdles are really hard to overcome. i am not sure it is possible.

In regards to the most excellent work of Dr Fluge and Mella, here in our socialized health care system, our oncologists are paid by salary and the agency they work for only sees cancer patients. There is no possibility for a non-cancer patients to ever reach an oncologist. So surely enough it will take a lot of time, most likely years or decades before patients here can access Rituxan. Considering the prohibitive cost as well and the stigma we are facing, I don't think it will happen.

 

[Jonathan Edwards]

I am facing tremendous amount of red tape, stigma, lack of knowledge, (lack of time for dr to read litterature, even if I provide it) lack of interest, lack of medical specialty willing to take care of pts with ME and a clinic which is not offering real medical treamtents.

These giant hurdles are really hard to overcome. i am not sure it is possible.

In regards to the most excellent work of Dr Fluge and Mella, here in our socialized health care system, our oncologists are paid by salary and the agency they work for only sees cancer patients. There is no possibility for a non-cancer patients to ever reach an oncologist. So surely enough it will take a lot of time, most likely years or decades before patients here can access Rituxan. Considering the prohibitive cost as well and the stigma we are facing, I don't think it will happen.

I think the way to overcome the ignorance hurdle - which I think is the main one - is for patients to show up their physicians by being more knowledgeable than they are and making them go and read up. That is why I think PR has a very important role to play. A lot of researchers and physicians know what is going on on PR even if they do not contribute. I think it has more impact than people might suspect. Things take time but often a wall finally gives way more quickly than you expect.

I think you will find that Fluge and Mella work in exactly the same sort of system as yours, just as I did - a socialised system that pays a salary to do a job. I would not personally want anything else. It allowed me to do my research, and it has allowed F&M to do so, even if we had to work at it and break rules. Innovation in a commercially-based environment has now almost come to a complete halt because short term cash return is given priority. And you cannot trust any of the data. We need unbiased results and F & M will give us those in due course.

 

[Snow Leopard]

I think the way to overcome the ignorance hurdle - which I think is the main one - is for patients to show up their physicians by being more knowledgeable than they are and making them go and read up.

For what it's worth, I agree. But there seems to be a reactionary movement within medicine of doctors who don't like patients doing their own research. Either because they are frustrated with patients who come up with erroneous explanations, or perhaps they feel intimidated etc.

The tragic part is when the doctors think they know better, to the point of malpractice and it results in death:
http://www.theage.com.au/world/teen...er-symptoms-before-death-20150616-ghprjf.html

 

[voner]

......the way to overcome the ignorance hurdle - which I think is the main one - is for patients to show up their physicians by being more knowledgeable than they are and making them go and read up... ......A lot of researchers and physicians know what is going on on PR even if they do not contribute.

in theory, your statement is valid. However, it irks me. I suspect when you wrote this you were thinking of "ME/CFS specialist", rather than "physicians". The "physicians" that you, Jonathan Edwards, have contact with are not your average physician, they are ME/CFS specialists. Here in the United States, there are maybe tens of ME/CFS specialists. far, far more patients. Accessing those physicians you are thinking about is very difficult and expensive for most of us.

you seem to want your cake and eat it too. your wag your finger at us patients and cautioning us to not try experimental treatments, but at the same time you're telling patients to become educated and informed and push their doctors for treatments. that infuriates me. I'm sure it comes from my frustrations with clueless, careless and uncompassionate medical doctors and not you personally. your participation in this forum is invaluable and I wish more researchers and ME/CFS specialists would participate.

No established treatments currently exist for ME/CFS, so what are we to do? either we're well educated patients and we trust our doctors to practice responsibly while trying valid (to us) options or we should just sit back and wait for the 20 or 40 or 100 year time frame to play out until the medical system is well educated on our disease and has proven treatments? I know which option I'm choosing.

I will also point out that many people (Including myself at times) have chosen to go outside this medical doctor system and use other "healthcare practitioners" who advocate far, far more questionable treatments. what else are we to do?

It also frustrates me to have the burden of education and advocation, etc. be thrust on patients who are brain fogged, memory challenged, financially burdened, and very sick. but, that's the way it is and I guess we move on from there.

enough venting!

 

[Purple]

I think the way to overcome the ignorance hurdle - which I think is the main one - is for patients to show up their physicians by being more knowledgeable than they are and making them go and read up.

I agree with this (though I try not to act as if showing them up!) - though I understand that it is difficult to do for PWME and in a just world, it should not be down to patients to educate their doctors, especially in something as self-evident as ME being a serious disease affecting people's lives so much.

But I think (and perhaps someone who moves in medical circles can correct me?) that every doctor who realises what ME really is and how it affects patients tells other doctors about it. Basically, people talk... so I am assuming doctors talk among themselves too IMO, the direction in which science is moving gives a lot of indication of the biology of ME and adds to understanding a lot, even if not published yet.

From bitter personal experience, I went from being threatened with being sectioned due to suddenly becoming ill and looking for answers why, to being insulted at every opportunity due to being ill and questioning the validity of GET and CBT, to my illness becoming accepted and doctors actively encouraging me to tell them of the latest research (I am in the UK so no treatment for me, sadly).

Reading PR helps me enormously in understanding both the good science of ME - and the bad - and with being able to communicate with doctors on a level where I am able to explain things coherently and logically, even when brain fogged, and be seen as a partner. I no longer get patronised (or worse) because of being severely ill with ME. Sometimes, just being able to explain how a lot of the psychobabble around ME in not good science has helped greatly. I have seen the look of confusion (many times!) which probably meant "this patient is supposed to be not trying hard enough but seeing the patient in front of me, that just doesn't make sense".

I try to communicate matter-of-factly, not bring politics or other illnesses into it, just talk reasonably and with common sense really. Be knowledgeable... and not engage with those who are not interested, rather find someone else who is - as the saying goes: "you can't win them all".

I hope that convincing the few doctors I managed to convince helps others too.

 

[Kati]

For what it's worth, I agree. But there seems to be a reactionary movement within medicine of doctors who don't like patients doing their own research. Either because they are frustrated with patients who come up with erroneous explanations, or perhaps they feel intimidated etc.

The tragic part is when the doctors think they know better, to the point of malpractice and it results in death:
http://www.theage.com.au/world/teen...er-symptoms-before-death-20150616-ghprjf.html

i agree and I would add that doctors feel intimidated by how information is shared, by social media and by he fact that patients know more than them.

Then there is the huge hurdle that this disease (once more)doesn't belong to a medical specialty, that Gp don't have time to explore for 1 disease when they are seeing 40-60 patients a day and when they are pretty much forbidden to use off-label drugs.

Then when the patient is actually looking for specialist referrals, it usually takes a long while to figure out who you need to see. GP will not want to to 'shop around' or seek out second opinion if you don't like the first one.

It's tough out there.

Edit to add: I think physicians struggle with power, and loss of power over information. It's very threatening and it is also difficult for them (in general) to have to adjust to a new role where patients have a more equal partnership in at least some areas of health care.

 

[Jonathan Edwards]

in theory, your statement is valid. However, it irks me.

It also frustrates me to have the burden of education and advocation, etc. be thrust on patients who are brain fogged, memory challenged, financially burdened, and very sick. but, that's the way it is and I guess we move on from there.

enough venting!

Please do not be irked, @voner.

It is easy to get the tone wrong and I was not implying 'you patients should do this' so much as 'we can do this and it might actually work'.

A few days ago I mentioned that I was amazed to find at a conference on consciousness that one of the key speakers was a researcher on ME/CFS. Today was much the same. I have just been telephoned by a high powered biomedical science reporter (fresh off a piece for Nature she said) who wanted to ask me about the 'turning point that is occurring in ME/CFS in terms of research'. ME is actually getting noticed and I have reason to think that PR is relevant to that. The message may not get through in the doctors office down the road but it is getting through to the people who may be able to make a difference.

I agree that there is a big gap between ME clinician researchers and the average physician who deals (from time to time) with ME. But if things go a bit viral then suddenly the average physicians are boning up on it. It happened for osteoporosis, which at one time was too boring even to think about and then suddenly it was all that every doctor did think about.

Not everyone can play every part in the process. Each can push on the door in whatever way suits. But if there are enough people pushing from all directions I think it may open.

 

[heapsreal]

It was mentioned recently in this thread that PR is well known by many health professions. If a dr decides to look up anything on cfsme and googles it, the first page of hits he will get a link to PR or if they search rituximab or antivirals in cfs, they will find this site. So information and understanding is slowly coming out with the help of phoenix rising.

I also hope they read past all the science of cfsme and also look at the personal struggles many of us have. Although it can be hard to tell as many articulate their thoughts and opinions well online compared to face to face communications when our cognitive issues are a lot more apparent.

Cheers