Head of ME association is sacked
BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7401.1232-c (Published 05 June 2003) Cite this as: BMJ 2003;326:1232All rapid responses
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As someone who recently rejoined the ME Association, I have been
reading with interest the dispute between the organisation's board of
management and its former medical advisor Dr Charles Shepherd.
Several years ago I allowed my membership to lapse because I had
become profoundly disillusioned with the organisation. In recent months I
have received a number of mailshots from them urging me to renew my
membership. I eventually decided to do so on the basis that I had nothing
to lose. However I didn't send my cheque off with any great enthusiasm.
Ironically one of the reasons for my disillusionment was the stance
taken by Dr Shepherd over a number of issues. What used to particularly
infuriate me was that time and time again a patient would write to the
association's magazine exasperated that his GP would not allow him to try
a particular untested/experimental treatment. Dr Shepherd's response was
invariably to side with the GP and in some cases he would go further and
say that he also would not allow one of his patients to try the treatment
in question. The patients concerned were generally very well informed and
had carefully weighed up the risks of the treatment against the potential
benefits. This kind of paternalistic nonsense is one of the main reasons
why so many ME sufferers are alienated from the medical prefession.
Dr Shepherd's (and presumably the ME Association's) stance is
essentially that no treatment should be tried until it has been fully
tested by a large randomised controlled trial. At first glance this sounds
reasonable. However what he seems to forget is that because of the
generally dismissive (and in some cases downright hostile) attitude of the
medical profession to this condition, the necessary research is not likely
to be carried out in any reasonable timescale, and human beings have a
limited lifespan.
As a patient you essentially have two choices, either follow Dr
Shepherd's advice and do nothing in which case your life is effectively
over, or do your own research and take your chances with any experimental
or unproven treatments out there. I have chosen the latter, and I am
constantly fustrated by the lack of support I receive from my GP and the
other doctors I have come into contact with.
Another reason why I allowed my membership to lapse was that the
organisation had developed an increasingly cosy corporate (perhaps even
complacent) feel. The organisation has also muddied the water over whether
ME is a physical or psychological illness in a misguided attempt to engage
with the medical profession. This approach has been an abject failure. We
need to take a leaf out of the book of AIDS activists who in the 80s
adopted a far more aggressive attitude to the medical profession and
government bodies. At the time this approach was condemned as being
counter productive. But look at the result, there is now effective
treatment for AIDS and the prospect of a cure in the not too distant
future. Contrast this with the negligible progress that has been made in
understanding ME since the ME Association was founded 25 years ago.
With regards to the current dispute, I don't believe that enought
hard facts have emerged to determine who is the wronged party. However I
do have one point to make which supports Dr Shepherd's position.
In the latest issue of the ME Association's scientific bulletin a
request is made for members to volunteer to become research associates.
However you are only allowed to take up this role if you agree to several
conditions. The first condition (and I quote verbatim) is as follows:
"The opinions you put forward when acting as an associate must be
those of the MEA. If you want to express your own views which are
drastically different from ours then you will probably not be suitable as
an associate. The way to proceed would be to promote our views but try and
convince us of your point of view. To be a force to be reckoned with we
must all speak with one voice and individual opinions would only dilute
the message."
This would be a slightly dubious condition to impose on a paid
employee. But to try and impose it on an unpaid volunteer is frankly
ridiculous. The ME Association appears to be behaving more like a
political party than a charity.
Competing interests:
None declared
Competing interests: No competing interests
Responding to the head of the ME Society being sacked.
The desperate situation of these ME/CFIDS people is that
they get no proper funding for what is clearly a real
illness. I tried to flux out the differential for
Neuroborreliosis (most of the people in my Support
group were diagnosed as having CFIDS before they got
a proper Lyme disease diagnosis) and CFIDS, to tabulate a few years
ago. I wanted to run the indices of pathology in Lyme
disease, against ME/CFIDS, and I ran into a problem: There's
no scientific data on CFIDS to run against Lyme. These
Psychologists/Psychiatrist have a stranglehold on these
poor patients, without any scientific validity to
Psychology or Psychiatry.
Lyme can be "seronegative" and most often is,
because Lyme disease became "LymeRIX disease"
by serological definition, in order to falsely
qualify Lyme vaccines. These vaccines either came
off the market, or never went to market, because...
they were not vaccines.
I have tabulated now, what can be discovered, to cross
index markers of illness, between Lyme Neuroborreliosis
(a permanent brain infection) and ME/CFIDS.
The tabulation links directly to the USA MEDLINE.
These CFIDS people are SICK. Let them go, from the
stranglehold of Psychology and Psychiatry. If they
have coinfections, they will likely not show
up positive in a "Lyme test".
Borreliosis and related vector borne diseases are
VERY big in the UK and in Europe and in Ireland.
It's not LymeRIX disease. It's identical to ME/CFIDS,
wherever a marker of illness had the good fortune to
be studied. These people are immune suppressed- not
news to those who suffer it.
See our http://www.actionlyme.com website.
See "Pathologies" and then "Indices of Pathology",
especially. And discover why ME/CFIDS patients can
be "seronegative".
Sorry it isn't complete, Old news gathers. Borreliosis
is a permanent infection of the brain. This is not
USA data, this is UK Military Medical Officer's
data, from World War II.
Let these poor people go, and give them a break.
They are very, VERY sick. Study the pathology
of the diseases. Discover vector borne diseases.
Their suffering can end. Mine did, after 9 relentless
years of the LIVING HELL of Chronic Fatigue Syndrome.
CFIDS feels just like the flu. It feels just like a virus.
Lyme feels just like a flu. It feels just like a virus.
This is why it is so hard to convince these CFIDS
people that they may be infected with a bacterium,
rather than a virus. It's a relentless, diffuse,
toxic state, that ends up as a delirium, in short
order. Otherwise known as "brain fog".
I have the markers of "brain fog", on the website.
It's not the domain of Psychiatry, and Freud and
penis envy, and Oedipus, or any of all of that
ridiculous nonsense. Freud was afraid of numbers.
If that's not a clue to the validity of Psychiatry,
I don't know what is.
Kathleen Dickson
Analytical Chemist
Retired, Pfizer, Inc,
Groton, CT, USA
Special Testing and Analytical
Development (STAD) Group.
Competing interests:
None declared
Competing interests: No competing interests
I cannot even believe you would say that about someone you do not
even know.
Have you read any of Dr Shepherd's work? Well, believe me I have and
for many years. Actually my opinion does not count but certainly the
consumers does. Patients respect him. That is what is important.
I find your attitude to this entire problem surprising given you have
no idea about Dr Shepherd's circumstances and neither you or I can judge
his position. All I can say is if internal systems had worked than Dr
Shepherd would not have been fired. His concerns should have been
investigated. I fear the problem may have been raising uncomfortable
issues about the running of the association itself. The ME Association did
not wish to hear uncomfortable issues about themselves.
I am a great believer in Charities being accountable. Indeed, the ME
Association should be reported by Charles Shepherd to
Investigations by the Charities Commission
http://www.charity-commission.gov.uk/publications/cc47.asp
Given that Dr Shepherd may be further victimised for his views, I
have taken it upon myself to report them to the Charities Commission
myself.
My last point is this, ME is a condition that none of us really
understand. There is a requirement for variable views to instigate
debate.Science is all about debate. The ME Associations actions in
preventing free speech will compromise patient care. This is what worries
me.
I certainly WILL not be referring my own patients to this association
until it has been fully investigated by the Charities Commission. I
suggest that ALL doctors follow suit.
Lastly, I think publicity is needed for issues like this. Social
Awareness is important when accountability is limited.
Kind Regards
Dr Rita Pal
Editor
www.nhs-exposed.com
The Truth Behind the White Coat
Competing interests:
I happen to know that Dr Shepherd works above and beyond the call of duty. That is his patients' view.
Competing interests: No competing interests
Dear Mr Linus Devoree,
We`re gregarious creatures and form alliances just like any other
bunch of monkeys.Back scratching/slapping/mutual grooming keeps the thing
going,sorts out the men from the boys.You know who`s boss,slap his back as
often you can.
Any little threat intensifies the mutual grooming/slapping.
It`s called "closing the ranks". And anyone experiencing that will
know just how chilling it is.Especially if it involves doctors, lawyers,
priests etc.
We`ve slightly bigger primate brains,and boy can that cause even
bigger problems.Sometimes they can be used to counteract basic
instincts.Usually it takes someone with their lights on to alert the band
to their darkness, and they can manage in the nick of time to change.
Quite often if it`s been dark a long time in the corporate cranial
cavity, the shining one is misperceived as the threat and amidst much
increased backslapping is cast into the wilderness just before the band`s
demise.
When the lights are truly off, the shining one is misperceived as
"arrogant" and mighty moral grunts can be heard.
If I can get ever my lights back on and some serious research is done
on M.E. to help that, I`ll be finding some other source for legal
information than LexisNexis.
Yours
Doug Fraser
Competing interests:
None declared
Competing interests: No competing interests
As a person who knows most of the news and gossip on the internet, I
have been following the Shepherd saga with great interest.
Having treated patients with ME myself, I have found Dr Shepherd's
research and advice invaluable. I also know of him and his excellent work.
As for the ME Association, I viewed a obnoxious message on their site
sometime ago regarding Dr Shepherd which I found to be insulting to any
professional who had served and worked for them. I have no idea about the
ins and outs of the politics but they will be at a loss without Dr
Shepherd. Indeed, I pity them for their lack of insight.
On a further note, Dr Shepherd is a good doctor. There is no doubt
about that. The results of his patients show this. Indeed, Dr Shepherd had
a duty of care to stand by what he feels is medically correct.Anything
else would be wrong ethically. For that he should be admired.
I suggest a plan for Dr Shepherd - he should obtain charitable status
for a support group of his own and set something up. I am certain that all
patients will migrate towards him.
I think it is very easy to be caught up in the bickerings of ivory
towers like the ME association but in the end something constructive needs
to be done.
Dr Shepherd certainly has a lot of doctors' support and those of us
who know his work respect him for the competent doctor he is no matter
what the ME association says. Dr Shepherd should be allowed his freedom of
expression without being undermined for it.
Kind Regards
Dr Rita Pal
www.nhs-exposed.com
Competing interests:
None declared
Competing interests: No competing interests
Linus Devoree is quite right to say that disputes with employers
should, wherever possible, be sorted out by internal mechanisms but fails
to understand the sequence of events that led to me publishing my concerns
in the public domain.
The key facts are as follows:
1 Three out of seven ME Association (MEA) trustees resigned in early
March because they could no longer countenance the way in which the
charity was being financially administered.
2 The MEA withheld this vital information from the membership and co
-opted three new trustees (two of whom had only resigned from MEA
positions a few months earlier) without giving the members an opportunity
to put forward their own possible candidates for co-option.
3 News of a very serious and steadily deteriorating financial
situation has been withheld from the members for a much longer period of
time. And the charity, which has now been in existence for more than 25
years, has had to announce in mid May that unless it can raise £150,000 in
60 days, then it will almost certainly have to fold. Expenditure has
obviously been exceeding income for quite some time, and the reserves
(which were fairly healthy following the sale of its old premises before
moving to leased offices) are almost exhausted.
4 During this time the MEA has encouraged its members to donate
money to a research fund (the Ramsay Research Fund) even though it appears
that this money could end up in the hands of creditors if the MEA becomes
insolvent.
I, along with other MEA medical advisors, have had numerous
differences of opinion with the MEA over the past two years. The trustees
who resigned have had serious concerns about the financial administration.
We have all sought to have these issues resolved internally but failed to
gain any satisfaction. The trustees decided to resign but have not made
their concerns public. I simply reached the point where I felt it was
unethical to comply with a confidentiality arrangement in my contract and
decided it was time for the members (and the Charity Commission) to know
what was happening at the MEA - even if this resulted in being given the
sack for doing so.
Just for the record: I have been MEA Medical Director/Advisor for
approximately 15 years. For a considerable period of time I have carried
out this work on a voluntary basis. In recent years I have been paid a
part-time honorarium which is well below BMA recommended rates for non NHS
work - I can assure Linus Devoree that employment in the UK medical
charity sector is not generously paid.
And I did not contact Owen Dyer about publishing this story in the
BMJ - he contacted me and I agreed to co-operate.
Charles Shepherd
Competing interests:
Formerly Medical Advisor to the ME Association
Competing interests: No competing interests
Whatever the truth of the removal of Dr. Sheperd as advisor to the ME
charity, there are mechanisms to deal with this sort of internal dispute.
This sort of public antagonism does nothing for the individuals'
credibilities, the voluntary sector, the medical profession and especially
not the truth.
An alternative possible explanation is that Dr. Sheperd is smarting
at the loss of both status and a comfortable income following dismissal
for ‘statements made by him that were deemed by the Board to be
inconsistent with his position’(from the website).
Many an arrogant high profile individual, whether a business owner,
politician or professional has found, to their shock, that they are not
wanted by their management and the organisation carries on very nicely
(sometimes better)without them. They need to get over it.
No-one is indispensable and no-one is more important than the cause
that they serve.
Linus Devoree
Legal publisher
Competing interests:
None declared
Competing interests: No competing interests
I find it bizarre that the medical/psychiatric/phychological
establishment has decided that most psychiatric illnesses are actual
physical and require medication(s) to help the brain function properly
while illnesses with physical manifestations such as CFS/ME are
psychiatric personality disorders that develop often in mid-life or even
later and no one noticed them before. In the U.S. this enables the powers
that decide who gets disability to give disability benefits automatically
to those with psychiatric and phycological illnesses while denying
benefits to people with physical problems.
Competing interests:
None declared
Competing interests: No competing interests
If a doctor really wishes to whistle blow, statutory requirement and
criminal law is superior to contractual agreements. If a patient dies of
neglect and a doctor fails to report it, they may be investigated by the
police. There is a duty to report crimes to the relevant authorities. Not
a lot of people know that.
Failure to report also has repercussions :)
I do though agree with Dr Shepherd. I think there is a more important
complication for medical whistleblowers. The problems arise in the
profession itself.
The General Medical Council's dealings with whistleblowers can be
viewed on www.generalmedicalcouncil.co.uk
The culture of silence is the main factor in preventing doctors from
whistle blowing. Those who disobey the culture of silence will pay the
penalty. The penalty is a character assassination of your ability as a
doctor, your mental state, and your life. The only way to fight this is an
intellectual assassination in the opposite direction.
There is currently no safe method of whistle blowing. Only the
bravest dare to whistle blow and only the toughest remain functioning in
their normal lives.
Kind Regards
Dr Rita Pal
www.nhs-exposed.com
The Truth Behind the White Coat
Competing interests:
None declared
Competing interests: No competing interests
Who is Linus Devoree?
I thought the rapid response from 'Linus Devoree' in support of the
ME Association was a bit fishy so decided to check with Lexis Nexis - the
international law firm that he claims to work for.
Russell Gray, their Managing Director, has confirmed that 'Linus
Devoree' has no connection whatsoever with the company. In fact, they
have never even heard of him. Not surprisingly, Lexis Nexis have made it
clear that they hold no opinion on my sacking and view this type of
publishing deception as a serious matter.
The email abuse department at hotmail.com are now carrying out checks
to see if they can help to identify who 'Linus Devoree' really is - I
certainly have my suspicions. But perhaps the most appropriate answer is
in the anagram: Evil done? Sure!
Charles Shepherd
Competing interests:
Formerly Medical Advisor to the ME Association
Competing interests: No competing interests