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Horrifying article in Sunday Times

anniekim

Senior Member
Messages
779
Location
U.K
Professor Newton, she is doing research into the ans in m.e and other things in Newcastle, Uk, in an interview out online today says how some eminent colleagues mock her for being involved in m.e research. Sadly not surprised to hear this but still depressing and gives a a further window into what many of the the medical profession here in the uk think of our illness
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
You are wrong on several points. The issue is one of credibility and in order to establish credibility we must have letters signed by these doctors and researchers sent into leading newspapers and scientific journals. Once we have credibility for our illness then governments and research bodies will increase research funding into the biological causes of ME/CFS. For 20 years we have had researchers being blocked from getting funding because ME/CFS lacked credibility. The psychiatrists had destroyed the credibility of ME/CFS. And those researchers who got funding received very little money, and their results were mixed. Its all about establishing credibility and using this to get more money for research. ME/CFS receives very little funding compared to other illnesses.

You cannot rely on the existing system, dominated by wessely and his school, which has reduced ME/CFS research funding down to pennies and cash starved research !

Its not just about low funding itself. In an environment of poor funding our researchers design smaller studies so they cost less. This means the scope and reliability of those studies, and eventual replicability, is lower than it should be. We need studies that are larger in general, but also because the heterogeneity of the patient mix, even under ME diagnoses, is probably high.
 

David Egan

Hermes33
Messages
37
Yes Alex I agree. Large studies require more money. And more money requires credibility among those who give out money.
Heterogeneity can be minimised by use of strict diagnostic and trial entry criteria (Canadian Consensus Criteria) and by use of well known biomarkers and use of subgroups. It involves a new strategic mindset. I've tried to raise awareness about this at www.cfs-ireland.com

I am very impressed with the contributors and quality of contributions on Phoenix Rising. I may not agree with some comments but I respect the quality of comments and contributors on this site.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Yes Alex I agree. Large studies require more money. And more money requires credibility among those who give out money.
Heterogeneity can be minimised by use of strict diagnostic and trial entry criteria (Canadian Consensus Criteria) and by use of well known biomarkers and use of subgroups. It involves a new strategic mindset. I've tried to raise awareness about this at www.cfs-ireland.com

I am very impressed with the contributors and quality of contributions on Phoenix Rising. I may not agree with some comments but I respect the quality of comments and contributors on this site.

Yes i agree David - and i thik it has a vvery good reputationn due to that ; i wil check out your Irish site.
the "Viking" link for ME/cfs?

cheers

I am an Egan too! lol
\
Ally
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Yes Alex I agree. Large studies require more money. And more money requires credibility among those who give out money.
Heterogeneity can be minimised by use of strict diagnostic and trial entry criteria (Canadian Consensus Criteria) and by use of well known biomarkers and use of subgroups. It involves a new strategic mindset. I've tried to raise awareness about this at www.cfs-ireland.com

I am very impressed with the contributors and quality of contributions on Phoenix Rising. I may not agree with some comments but I respect the quality of comments and contributors on this site.

Unless something very specific is being investigated I don't think studies should subgroup too much in the patient recruitment. I think they should subgroup for analysis, using every subgroup available. This of course means that for statistical reasons you need an even bigger patient cohort, which brings us back to money. It also means that the study has to pay for all those tests ... even more money.

Where recruitment subgroups are good is if we can identify treatment biomarkers - markers that enable us to identify those who will respond to treatment are a great idea if you are trying to establish how effective a treatment is. We all know how most treatments only work for some and how we currently have to try them to see if they work (Rule 22: The Lemon Rule). However if we had reliable treatment biomarkers then the guesswork would to a large extent be taken out of this.

Even the CCC or ICC is not guaranteed to get a good cohort, just a better cohort. I am in complete agreement that to really advance research we need good biomarkers, and that existing biomarkers should be used where ever feasible.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Esther12 has flagged up a publication by the SMC, which seems to date back to Feb 2013, but I haven't seen it before:

http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

It's a self-congratulatory publication, in which, they celebrate their role in various ME-related media issues, including the Sunday Times article...

Esther describes it well...

They've recently been celebrating their role in the way PACE was presented to the media, and the way that they were able dum up concern about anti-psychiatry CFS patients while glossing over the problems with the poor psychiatric research which surrounds CFS...

'maxwhd' on Twitter has highlighted some relevant text, which I've quoted below:

http://www.twitlonger.com/show/n_1rkle9f

SMC ran second brainstorm in early 2013 to discuss what can be done -

Maudsley Charity (previously South London and Maudsley NHS Trust Charitable Funds) awarded the SMC a grant of £10,000 p.a. for 3 years -

The SMC's work on mental health research has produced more awards than any other area of our work.

The SMC ourselves won the European College of Neuropsychopharmacology’s inaugural Media Award for science in the media for our championing of evidence-based science in the face of received wisdom, public prejudice and special interests, and our efforts to ensure that the most critical issues currently affecting science and public health are debated on the basis of accurate and objective scientific information.


Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME.


The SMC had nominated him for the award.


Tom Feilden was shortlisted for a Mind Media Award for his package that came directly from an SMC briefing on the role of mental health experts in Broadmoor Hospital.

The SMC jointly nominated Simon Wessely for the inaugural Sense About Science John Maddox Prize for Standing up for Science for his courage and bravery in speaking out on CFS in the face on intimidation, which Simon won.

<>

Tom Feilden, science correspondent, BBC Radio 4 Today programme said:

“Despite being such an important part of the health care agenda, mental health is often overlooked by the mainstream media. Claire Bithell's tireless efforts behind the scenes at the SMC have helped us address that problem on the Today programme. Recent examples include features on self harm, schizophrenia, and exposing the abuse and intimidation suffered by researchers working on chronic fatigue syndrome. We certainly wouldn't be up for a Mind Media Award [for our series "Inside Broadmoor"] without her.”

<>

Supporting experts targeted by extremists


We have also been involved in supporting experts who have found themselves being targeted by individuals or groups who do not like their research.

This has been particularly important in the case of psychiatrists and psychologists working on chronic fatigue syndrome/ME.

These researchers have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.


The SMC ran a press briefing on the first findings from the PACE trial, and supported the researchers involved throughout this process, for example, by organising media training in collaboration with the MRC.

When we became aware of the level of intimidation researchers were experiencing we brought together key parties for a brainstorm to discuss what could be done to aid researchers.

At this event it was agreed that these harassed experts should speak out publically about the harassment they were experiencing.

As a result the BBC Radio 4 Today programme ran an exposé on the piece (http://www.bbc.co.uk/news/science-environment-14326514) and a number of outlets followed the story including the Observer (http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis) and the Daily Mail (http://www.dailymail.co.uk/health/a...reats-investigating-psychological-causes.html).


For some researchers this media work has dramatically reduced the harassment they are experiencing.

For others, however, things have not improved.

So the SMC ran a second brainstorm in early 2013 to discuss what can be done.

It was agreed that more must be invested in putting the case for research of chronic fatigue syndrome/ME explaining the burden and seriousness of the disease both to the media and the public.

The SMC will look for opportunities to do media work in this area.

<>

One of the consultation findings was that psychiatry is particularly badly portrayed in the news media so the SMC has concentrated a lot of effort on getting to know academic psychiatrists.

This has been a great success, however we do not have as many academic psychologists on our database and do not have as good contact with the research community in this area.

We could do more to engage with this subject area.

Action point: the SMC makes contact with more academic psychologists and ensures they are well represented on the SMC database.

<>

Seizing the agenda

As well as breaking stories of new research and responding to mental health in the news, the SMC has also helped to set the agenda and frame the narrative of reporting on a number of big issues.


Previous to our background press briefing on DSM 5 few of the UK based science journalists knew about the unease amongst UK scientists.

The background press briefing generated vast media coverage and informed the UK’s most important health and science reporters of the issues of concern.

The SMC followed this up with several Roundups including comments from large numbers of the UK’s top mental health researchers, all generating continued media coverage.


This kind of agenda setting was also on display in our work around the harassment and intimidation of researchers working on chronic fatigue syndrome/ME.

The meeting organised by the SMC on this was the first of its kind and brought the beleaguered researchers together with representatives of funding agencies, the police, the GMC etc.

One of the results of that meeting was the decision of a number of academics to go public on their situation with the support of the SMC and their respective press officers .

The SMC engineered the coverage through working with the Today programme on an exclusive – a story that was planned over many weeks.


The result was huge with Today making the very best of their exclusive with several different packages on the morning of release.

As expected the follow up was huge with almost every newspaper, Sunday paper and influential magazine covering the subject in some way.

The results of that coverage have been mixed but include the following:

Many in the scientific community became aware of the situation having previously been unaware

For some researchers the media coverage marked the end of their harassment.

For others it has continued

Across the board the researchers who were interviewed received a huge amount of supportive emails from fellow scientists and from chronic fatigue syndrome/ME patients and their families


Conclusions


A mental health research function has been established at the SMC and has tackled a wide range of issues.

We work with a robust network of experts, press officers and journalists that all influence our work.

Our proactive press work has been popular with journalists and experts have benefited from our support to help them speak in the media.


However, demands for our time in this area now exceed the time available.

As a result the SMC will run a stakeholder event to plan a strategy for the future which will mean this work can be focussed on the areas that most need support from the mental health press officer.


Action point: the SMC will run a stakeholder event to plan strategy for future work


http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf


Review of the first three years of the mental health research function at the Science Media Centre


Science Media Centre is a registered charity (no. 1140827) and a company limited by guarantee (no. 7560997). Registered in England and Wales. Registered address: 215 Euston Road, London, NW1 2BE.

Review of the first three years of the mental health research function at the Science Media Centre February 2013

Dr Claire Bithell

Head of Mental Health

Science Media Centre
 

Shell

Senior Member
Messages
477
Location
England
By golly, this sure sounds like the language of propaganda --
 
"the SMC has also helped to set the agenda and frame the narrative of reporting "
 
"The SMC engineered the coverage"
 

My thoughts exactly.
 

David Egan

Hermes33
Messages
37
Yes i agree David - and i thik it has a vvery good reputationn due to that ; i wil check out your Irish site.
the "Viking" link for ME/cfs?

cheers

I am an Egan too! lol
\
Ally



Hi Ally so you are an Egan too. Thats rare and not many emigrated to Australia. You must have Irish roots then.
As regards the viking link, Dr. De Meirleir believes that a viking or Scandinavian gene is implicated in ME, and that northern and western european peoples are affected by this. The human genome is vast and largely not deciphered for relevance to illnesses, so its impossible to validate it.
 

David Egan

Hermes33
Messages
37
Unless something very specific is being investigated I don't think studies should subgroup too much in the patient recruitment. I think they should subgroup for analysis, using every subgroup available. This of course means that for statistical reasons you need an even bigger patient cohort, which brings us back to money. It also means that the study has to pay for all those tests ... even more money.

Where recruitment subgroups are good is if we can identify treatment biomarkers - markers that enable us to identify those who will respond to treatment are a great idea if you are trying to establish how effective a treatment is. We all know how most treatments only work for some and how we currently have to try them to see if they work (Rule 22: The Lemon Rule). However if we had reliable treatment biomarkers then the guesswork would to a large extent be taken out of this.

Even the CCC or ICC is not guaranteed to get a good cohort, just a better cohort. I am in complete agreement that to really advance research we need good biomarkers, and that existing biomarkers should be used where ever feasible.


I agree. Though I would add that the new and emerging use of (ME) Bio-Banks storing various types of samples from genuine ME patients (using CCC 2003 and ICC 2011) are the way forward for ME research globally. A team of researchers could take samples from 200-300 ME patients from a Biobank, including those who are severely ill (bed ridden). And collaborate with other research teams on samples of the 300 patients, with various teams focussing on specific aspects such as immune system, infection, mitochondria, neurological and brain, endocrine, intestinal, vascular, etc. The biomarkers listed here could serve as targets - www.cfs-ireland.com/structure.htm#8 . These research teams could then join their results together to build an indepth profile of all biological abnormalities, dysfunctions and infections present. Then subgroup the patients. New biomarkers could be added and old ones further validated, amended or deleted.

Having such subgroups would enable the development and deployment of medical drugs. Medical drug and herbal interventions could be devised by Biovista ( http://biovista.com ) in the USA which is engaged in research and data mining of thousands of medical drugs (including some which are currently out of use) to find matches between them and the symptoms, abnormalities and dysfunctions found in ME. They are compiling a list of these medical drugs. The FDA and pharmaceutical companies could also be drawn in to devise new drugs. The diagnostic criteria and biomarkers mentioned above could serve as a guide for assessing the effectiveness or ineffectiveness of a potential medical drug.

All applications for research project funding (globally) should be carefully drawn up by an international team of experts in the field of ME and submitted every year to governments and government agencies in the EU, North America, Japan, China and Australasia. This would ensure pro-active measures to stimulate funding for research and international coordiantion of ME research towards defined research goals and objectives.
 

biophile

Places I'd rather be.
Messages
8,977
Thanks to Esther12 and Bob for bringing this to our attention.

http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

Science Media Centre said:
Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME.

[patting themselves on the back for the fight against extremism]

Supporting experts targeted by extremists

We have also been involved in supporting experts who have found themselves being targeted by individuals or groups who do not like their research. This has been particularly important in the case of psychiatrists and psychologists working on chronic fatigue syndrome/ME. These researchers have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.

The SMC ran a press briefing on the first findings from the PACE trial, and supported the researchers involved throughout this process, for example, by organising media training in collaboration with the MRC. When we became aware of the level of intimidation researchers were experiencing we brought together key parties for a brainstorm to discuss what could be done to aid researchers. At this event it was agreed that these harassed experts should speak out publically about the harassment they were experiencing.

As a result the BBC Radio 4 Today programme ran an exposé on the piece (http://www.bbc.co.uk/news/science-environment-14326514) and a number of outlets followed the story including the Observer (http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis) and the Daily Mail (http://www.dailymail.co.uk/health/a...reats-investigating-psychological-causes.html).

[something about holding workshops for various issues]

This kind of agenda setting was also on display in our work around the harassment and intimidation of researchers working on chronic fatigue syndrome/ME. The meeting organised by the SMC on this was the first of its kind and brought the beleaguered researchers together with representatives of funding agencies, the police, the GMC etc.

One of the results of that meeting was the decision of a number of academics to go public on their situation with the support of the SMC and their respective press officers . The SMC engineered the coverage through working with the Today programme on an exclusive – a story that was planned over many weeks.

The result was huge with Today making the very best of their exclusive with several different packages on the morning of release. As expected the follow up was huge with almost every newspaper, Sunday paper and influential magazine covering the subject in some way.

The results of that coverage have been mixed but include the following: Many in the scientific community became aware of the situation having previously been unaware. For some researchers the media coverage marked the end of their harassment. For others it has continued. Across the board the researchers who were interviewed received a huge amount of supportive emails from fellow scientists and from chronic fatigue syndrome/ME patients and their families.

I thank the SMC for clearing up any doubts as to whether the onslaught of accusations about harassment, and the conflation of PACE Trial criticism with ideological extremism, was all part of an orchestrated campaign.

SMC said:
For some researchers this media work has dramatically reduced the harassment they are experiencing. For others, however, things have not improved.

A reduction in any harassment would be good. I wonder if this is mentioned in any of the recent coverage, or were the SMC happy to perpetuate an exaggerated public view of how much harassment is still going on. Has there been even a single conviction yet, or are death threats legal in the UK?

SMC said:
So the SMC ran a second brainstorm in early 2013 to discuss what can be done. It was agreed that more must be invested in putting the case for research of chronic fatigue syndrome/ME explaining the burden and seriousness of the disease both to the media and the public.

Oh no, they are giving what the extremists wanted all along!

SMC said:
One of the consultation findings was that psychiatry is particularly badly portrayed in the news media ...

Gee, I wonder why?
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Hi Ally so you are an Egan too. Thats rare and not many emigrated to Australia. You must have Irish roots then.
As regards the viking link, Dr. De Meirleir believes that a viking or Scandinavian gene is implicated in ME, and that northern and western european peoples are affected by this. The human genome is vast and largely not deciphered for relevance to illnesses, so its impossible to validate it.

Hi thanks David -

I thought the Human Genome project would get there eventually -- is that not likely i your opinion?
For example a Melbourne University geneticist told me recently they would have full genetic testing soon - withintn 2-3 years - for a related condition that is also stongly prevalent in the Irish and related Caucasian races ( see my signature below for a link). He said things are movign very quickly nos but he was not talkinng about HGP specifically.

THere are quite a few Egans here in Australia however - it is by no means an uncommon name.
THere are also some McEgans here and i think Keegan may be an adaptation thought i am just guessing on that last one.
Not sure where our Egans came from - i think from West coast Galway where our Brennas came from...(surely one of the coldest place on earth BTW .. !) SO glad I am now here in warmer climes - even if it was a tragic past that caused that move.

cheers

Ally
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

With reference to the SMC report above, for which extracts have been posted in this thread (on Page 10), here is the link for a report recently published by Jane Colby of TYMES Trust around the setting up of the UK CFS/ME Research Collaborative:


http://bit.ly/1vSRhOI


MAY BE REPOSTED

A new report from Tymes Trust:

Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC)

Today Tymes Trust publishes the inside story on the Collaborative. Here is the introduction.

-----

Introduction

When the UK CFS/ME Research Collaborative (UK CMRC) was set up in 2013, the Young ME Sufferers Trust declined to attend the launch, due to concerns we expressed in a Statement, the text of which is here:

http://www.tymestrust.org/txt/alert201305meawarenessday.txt

Our concerns continue. The following information is from 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC).

We note:

In the run-up to the full formation and launch of the Collaborative, a meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list:

* Freedom of Information Requests

* Complaints to the GMC and various institutions

* Parliamentary Questions


A series of Action Points include:

* 'Support4rs - Work with Peter White and Simon Wessely to develop resources for dealing with harassment'

* 'SMC – Run a press briefing on biosocial illness to improve public understanding.'

NB Two sets of written records are kept of Collaborative meetings; one for the Board, another for the public. This should be borne in mind when reading records that are placed online.

-----

Our report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community.

You can find our report here:

http://bit.ly/1vSRhOI

Jane Colby, Executive Director

Lesley Scott, Scotland Representative

The Young ME Sufferers Trust

-----------------------------------------------------------------------

I wasn't familiar with "Support4rs" mentioned in this extract. In fact, initially, I read it as "Supporters" and assumed it contained a typo, since "4" sits above "e" on a qwerty keyboard.

'Support4rs - Work with Peter White and Simon Wessely to develop resources for dealing with harassment'

This is the website for support4rs:

http://www.support4rs.com/

"support4rs - The Government's Preferred Supplier...


... contracted to provide protective services with regard to Animal Rights Extremism to research councils, public research institutions and medical research charities. Consequently we work collaboratively with the leading research locations throughout the UK drawing upon the experience of each for the benefit of all."

"We assess the current intention and capability of Animal Rights Extremist groups and what risk they present to members of the biomedical research sector.


"We assist with the compilation and maintenance of management plans and procedures needed when responding to any animal rights related incidents or threats.

"We advise stakeholders in respect of proportionate responses to incidents and the balance between lawful protest and unlawful activity."



There is a new thread, here:

http://forums.phoenixrising.me/inde...arch-collaborative-uk-cmrc-tymes-trust.32302/
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thanks to Esther12 and Bob for bringing this to our attention.

http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

I thank the SMC for clearing up any doubts as to whether the onslaught of accusations about harassment, and the conflation of PACE Trial criticism with ideological extremism, was all part of an orchestrated campaign.

A reduction in any harassment would be good. I wonder if this is mentioned in any of the recent coverage, or were the SMC happy to perpetuate an exaggerated public view of how much harassment is still going on. Has there been even a single conviction yet, or are death threats legal in the UK?

Death threats are definitely illegal! I understand that there have been no convictions, or prosecutions, or even arrests. There was one case of alleged assault reported by another member where head of the ME Association Charles Shepherd allegedly punched someone! There was a link posted to the incident on PR but I fully accept Dr Shepherd's response that it wasn't true (like most or all of the other allegations against the 'ME lobby'). It's still online though - here.

To be fair, SMC do say in their document that those doing the harassment are
a small group of extremists
and that
the researchers who were interviewed received a huge amount of supportive emails from fellow scientists and from chronic fatigue syndrome/ME patients and their families.
But maybe those quotes get lost amid the general emphasis and exaggeration.

There was a thread recently where a journalist was complaining about being 'attacked' on Twitter by ME/CFS patients following his own article. A brief look at the Twitter pages revealed a number of tweets which politely disagreed with him! I could see nothing that could be described as an attack.
 
Last edited:

biophile

Places I'd rather be.
Messages
8,977
Death threats are indeed illegal and other harassment can be also prosecutable. But it may be difficult to prove and there may be some threshold to meet before it explicitly becomes credible or prosecutable enough for the law to take effect. e.g. perhaps "I'll coming to kill you" would be treated differently than "you will all pay"* or "I hope you suffer".

Every year in the UK there are thousands of reported cases of harassment (mostly domestic) and thousands of attempted prosecutions. Nurses also cop a range of abuse and harassment regularly from all types of patients.

Trolling and online abuse has become common on today's social media on almost any issue (if you gathered 17 million people at random from the world, surely a fraction of them would be trolls, and if you gave them ME/CFS and treated them poorly, surely their trolling would become directed towards ME/CFS related issues).

There are laws in place helping to prevent researchers from being subjected to repeated abuse and harassment. So it seems odd that a notoriously "dangerous" and abusive patient community aren't being prosecuted regularly or at all in relation to research. That doesn't mean there have not been an occasional case between individuals over the last three decades.

I read a report mentioned on another thread which made me conclude that in general ME "militancy" or "extremism" just isn't bad enough for clear cut prosecutions and is more difficult to control because it has to be balanced with laws on freedom of expression. I imagine it would be unpleasant and unsettling being at the receiving end of the worst examples, but the vast bulk of it has not been death threats, but protests, objections, and criticisms, possibly some of which got heated or uncouth. One of the news articles (the one on this thread perhaps?) implies that the 50-80 figure isn't the number of people engaging in death threats but the number of alleged extremists, of which only a small fraction have allegedly resorted to death threats.

http://forums.phoenixrising.me/inde...pace-trial-protocol.3928/page-123#post-504816

Indisputable harassment of researchers is unacceptable, it's just that all the hyped news coverage and absurd comparisons to killers and warzones degrades the credibility of those making the claims. It is also rather revealing that some of the figureheads complaining the most in the press about harassment have behind closed doors seemingly endorsed a statement that freedom of information requests are the most "damaging" form of harassment.
 
Last edited:

charles shepherd

Senior Member
Messages
2,239
Death threats are definitely illegal! I understand that there have been no convictions, or prosecutions, or even arrests, except for one case where head of the ME Association Charles Shepherd allegedly punched someone! There was reference to the incident somewhere on PR but I can't find it - maybe it wasn't true. It's still online though - here.

To be fair, SMC do say in their document that those doing the harassment are and that But maybe those quotes get lost amid the general emphasis and exaggeration.

There was a thread recently where a journalist was complaining about being 'attacked' on Twitter by ME/CFS patients following his own article. A brief look at the Twitter pages revealed a number of tweets which politely disagreed with him! I could see nothing that could be described as an attack.
 

charles shepherd

Senior Member
Messages
2,239
Please could you withdraw this allegation

It is untrue and libellous

I don't believe that violence, aggression or abuse solves anything and I have certainly never 'punched anyone'

Here in the UK, if such an incident had taken place, it would be regarded as professional misconduct by the GMC

Do you ever wonder why so few of my medical colleagues (apart from psychiatrists) want to get involved with treating or researching this dreadful illness

I really do despair at times….