Recently Dr Esther Crawley accused US academics of hosting and writing libelous blogs
virology.ws/2017/05/08/tria...
As deputy chair of the CMRC and proposed lead on the MEGA research project the groups views on this behaviour were sought and this was the response
virology.ws/2017/05/10/tria...
The charities supporting the CMRC must act or be seen as complicit in this scandalous behaviour.
Different story when the same things that have been said about patients for years are used against professionals that can fight back without the stigma of hysterical patients label.
Crowdfunding legal redress for professionally damaging allegations is my suggestion Dr Tuller.
Such a disgrace that this is still even a battle anyone has to fight! We are suffering from total disregard by most of the medical profession and the government who has aided and abetted these disreputable psych 'researchers' and poured millions into more and more 'research' evidently with a view to 'curing' us of our lazy misguided beliefs and forcing us to get off government benefits if possible. They will end up spending more, but as with the cuts to social care and NHS services, that is not a deterrent to them as long as they themselves have adequate resources to cover their own health needs.
Dr. Shepherd has posted a new article about NICE guidelines and PACE on the ME Assoc. website.
meassociation.org.uk/2017/0...
I also notice that there is a bold and strong warning at the top of the page listing all the 'Specialist ME/CFS Services', which is only found by a quick link near the bottom right of pages of the MEA website. I don't know how long this warning has been there, but feel glad about it. However, with Child Services and GPs and specialist consultants in various fields continuing to spout this nonsense about getting more exercise or worse yet lecturing and verbally bullying patients when they are called to help with anything, as they keep doing with me, we are indeed looking at hundreds more being harmed, and tens of thousands of us continuing to just think we will avoid doctors even if it means we have some unrelated illness that could kill us.
After encountering this same worn out lecture all around and being sent on wild goose chases or given harmful, unnecessary medications like throwing pins at a dartboard... I feel I am better left to my own devices and the wealth of info on medical websites. However, there is so much I am still unable to deal with, despite having spent hours finding probable causes and asking them specifically to follow the exact protocol their own NICE guidelines have for a particular problem, I have given up even talking to my doctors. I will either die from whatever it is or I will not. Most don't care either way, I think.
Someone like Dr Crawley perpetuating these horrible lies about ME patients to consultants is just more evidence of how widespread and how deep their network of poison reaches, and we get it in the end, wherever we turn.
Meanwhile I now have to deal with local Adult Social Care manager deciding to cut back the care I have been receiving for several years, which has enabled me to keep my sanity, continue to be able to go to the toilet and get 3 meals a day, amidst the pain and exhaustion. Looks like I go from 3 meals a day to 1 and that one is breakfast, only because they will also give me a wash in bed at the same time.
I KNOW all this is related to the kind of negative and misleading messages coming from the Medical profession and these psych people who are proposing to cure us with some exercise programmes and talking us out of our symptoms.
Absolutely right budgiefriend , just look at the current push for dumping as many conditions as possible under the MUS (Medically Unexplained Symptoms) banner. All part of the plan to stigmatise sick people with 'it's all in your head and you're not getting better because you are simply not engaging with your treatments'. That way they think they can justify neglecting very sick people and removing their benefits.
So much for a civilised society!!
Thanks for sharing Dr Shepherds response though as a member of the CMRC he enjoys less of my confidence than he once had.
The collapse of adult social care is well documented and a report of “grave or systematic violations” of the UN’s disability convention disabilitynewsservice.com/u... has been ignored along with attempts at discrediting the findings.
Activism worldwide is slowly changing the perception of our illness in the meantime self management and our own hard earned expertise are all that remain between us and further deterioration.
You are right about how things are changing. At the moment it still feels to me like I am hanging by a thread--mostly bed bound and with no family or friends within thousands of miles, I have depended on social care which is now being cut drastically. As for Dr. Shepherd, I have never known exactly how to feel about negative things people say about him. As the medical person attached to the largest ME charity, he is doing a lot of good in a lot of ways I can see. his affiliations and trying to ameliorate those who we feel are our enemies (and I agree that they are) seems to me a way to keep the boat afloat as it moves slowly toward a better time for us via research and government change. I know people attribute bad motives to him, but it seems to me that he is trying to maintain the visibility of an organisation that already has some weight and public acceptance. He helped me by sending personal replies to questions I asked on the facebook page. he didn't have to continue to discuss it with me in several emails. He was very helpful. That doesn't mean that I think he is a saviour or anything. But it is hard for me to dislike him, and I think it would be better for us to focus on people like Prof. Crawley, who are still trying to destroy any chance we have of positive recognition and acceptance by the medical community. I understand the frustration and anger at his being part of such a corrupt organisation. It is unclear because we can't see what goes on behind the scenes, why and how he is interacting there. mystery...
CMRC affirms full support virology.ws/2017/05/15/tria...
Far from the neutral stance of only here for the science portrayed as the collaboratives purpose when formed I can only say disappointed rather than surprised considering previous history of some of the membership.
Calling the children MUPPETS now at Royal Devon and Exeter event
The story keeps on rolling virology.ws/2017/05/22/tria...
The MUPPETS thing was utterly shocking. Why does this continue without any larger organisation calling them to account for the horrible abuse of patients? There needs to be some watchdog authority drawing attention to the slandering and mischaracterisation of patients and clients by medical professionals. It is certainly an abuse of power and a denial of our human rights to speak this way in a 'professional' capacity or in a publication.
I don't understand why the same people who are concerned with gay bashing and animal rights and so many other serious issues, are not being made aware that there are large groups of sick people being maligned and abused by the very professionals who are supposed to be caring for them in an educated and rational way. This whole load of rubbish about MUPS and PUPS and GET and CBT with the various mumbo jumbo like the Lightning program needs to be seen for what it is: exploitation of patients by insensitive, opportunistic doctors and psychologists for their own purposes--having nothing at all to do with learning and proper research and treatment of severely ill people.
PACE Review
Research Funds
Institute Of Medicine Renaming