The USA CFS Advisory Committee (CFSAC) is a panel of eleven
people who meet several times a year over a three day period and the recent
CFSAC meetings held on 12-14 October 2010 have been broadcast over the web.
The previous CFSAC meeting held last year, after the Science
paper linking ME/CFS with XMRV was published, seemed to indicate a new era of
from the first day's science meeting were very mixed. The uplifting and forward
looking mood of last year's conference was gone and replaced by views and
research from the past with no clear direction seemingly coming from the
participants. The WPI XMRV research was hardly mentioned apart from doubts yet
again being spread about contamination and Dr Chia's enteroviral research would
have got no mention at all had it not been brought up by Dr Klimas in the
discussions that followed on from the presentations.
This year the committee completed its three-day meeting by
endorsing two recommendations for HHS, one of which was to add the "ME" to the
committee's title (CFS).
It is difficult to understand why we are still talking about
correct diagnosis and how to get there when we have the Canadian Clinical
Guidelines to help in making that correct diagnosis. These are consensus
criteria which involved clinicians who have diagnosed thousands of ME patients
and have seen patients from outbreaks of the disease. The experience of these
clinicians needs to be used to teach other doctors to diagnose correctly. Dr
Nancy Klimas showed clear biomarkers and new research should build on those and
move on with times.
Corridor gossip was casting doubts about the patients in the
Science study having been infected with injections they had been given over the
years as treatment. This is something which cannot be levelled at UK patients as
they certainly do not have any access to experimental treatments so there should
be no fear of contamination from treatments in the UK cohort, a study of which
is being prepared for publication. It also seems that some researchers do not
know what kind of patients they are studying. To get progress researchers need
to work closely with clinicians to understand the illness they are supposed to
be studying and to be able to formulate a meaningful hypothesis.
change suggestion to ME/CFS again provides a mixed message. Whilst accepting
that we need to move away from the CFS term by using ME in the name it was also
suggested that ME can stand for either myalgic encephalomyelitis or myalgic
encephalopathy - an unfortunate twist and a completely wrong message.
We have been here before.
Whilst a move away from CFS might be a good thing, using myalgic
encephalopathy does no good for people with ME or their families and will not
help future research or help raise awareness. This debate has been performed in
the past. The view has been put forward that encephalomyelitis does not
accurately describe the disease - even though the WHO code is encephalomyelitis
and there is convincing evidence of inflammation. Those pushing the term of
encephalopathy may well have other motives rather than the good of people with
ME as Dr Bruce Carruthers principal author of the Canadian Guidelines has
suggested in the past - click here
ME stands for myalgic encephalomyelitis - the official name. The
name myalgic encephalopathy does not exist and, when there is no consensus on
what new name should be used, it is pointless to muddy the waters by introducing
another temporary name which has no clear or credible backing.
The second day of the CFSAC heard patient testimony. Pat Fero
provided some of this and gave her pdf document to Invest in ME for publication.
Inadequate National Institutes of Health
funding for New Chronic Fatigue Syndrome Grants
follows the gathering
of evidence from requests under the freedom of information act. This is
available as a pdf -
This paper shows clearly how
little public funding has been spent on an illness which affects so many. And
how similar is this to what has happened in the UK?
Permanent Blood Donation Ban
Our letters to the Department of Health and to the Chief Medical Officer
regarding the dangers to the public from ME people donating blood seem to have
helped change their minds. Previously the CMO had stated to our earlier letters
that, in the
UK, people diagnosed with CFS/ME are excluded from donating blood while they are
"unwell" and "have symptoms". As we stated in our last newsletter "the UK Blood Services
Standing Advisory Committee for Transfusion Transmitted Infections decided it
was premature to make any change to the above in regard to the XMRV retrovirus
(despite Australia, Canada and New Zealand banning outright blood donations),
but that the situation would be closely monitored as new evidence became
available from the UK and from Europe. Hopefully the WPI/IiME UK studies may
help focus minds."
The NHS Blood and Transplant agency has issued a press release regarding the lifetime ban of blood and transplant donations from people diagnosed with ME/CFS.
This will be implemented from 1st November 2010.
Details of this are available from the NHS Blood and Transplant and The National Blood Service websites (www.nhsbt.nhs.uk and www.blood.co.uk).
This news was published by major media outlets on 8 October 2010 and the reason for this ban was given as not to harm the ME patient’s health as ME is a relapsing condition. The
press briefing states that -
“However, as ME/CFS is a condition where people can relapse and become ill again, donor selection guidelines are being changed as a precaution to protect the donor’s safety by ensuring the condition is not made worse by donating blood.”
There are many diseases of unknown causes but they are not on the banned diseases list.
Is the retrovirus research having an effect?
Our correspondence with the CMO pointed out inconsistencies in the previous
advice. Why isn’t the medical profession questioning the so called Wessely
school of thought on ME. It is after all doctors who diagnose people.
When ME patients provide evidence of biomedical research into ME it is often dismissed yet these same doctors seem to accept, against all
realms of common sense, the reasoning of the behaviouralists and psychiatrists.
Invest in ME have written to the Blood and Transplant Agency asking why, in
their press release, they chose not to reference the Lo et al. paper from NIH/FDA published by PNAS in May
- yet conveniently refer to the negative studies which were published in much lower impact publications.
Our letter states -
We wondered why your press release did not mention the Lo et al. paper from the NIH/FDA [http://www.pnas.org/content/107/36/15874.abstract?sid=30cc5eaa-5902-4097-b2ba-f436ae4eae7b] published by PNAS in May 25, 2010?
The Impact Factor rating is used as a guide to the relative importance of a journal within its field.
Therefore the publication by PNAS is far greater than the publications that published the negative studies to which your press release refer so it would be appropriate to reference this important paper from the two big US federal agencies in this context too and not just the negative study from the CDC.
It is also interesting that the main concern according to this press release is the protection of ME patients' health when NICE and NHS Plus itself recommend CBT (Cognitive Behaviour Therapy) with the aim of "cognitive restructuring of unhelpful beliefs and assumptions" and GET (Graded Exercise Therapy) as the only effective treatments for ME/CFS.
Is the blood service not at all concerned about the possible contamination of the blood banks with a new gamma retrovirus that has been associated with ME/CFS by two very high impact publications, The Science Magazine and PNAS?
The reason for banning ME(CFS) patients from donating blood in New Zealand, Australia and Canada (and the recommendation in USA) is due to the risk of contamination of the blood supply with a retrovirus.
We also wondered why there was suddenly such concern about the ME patients’ health status when NICE and NHS Plus guidance recommend CBT and GET as effective treatments for ME/CFS and proscribe any biomedical treatments,
as shown in this clip -
The spin on the blood donation ban for people with ME is just that. There would,
of course, be no reason to initiate a life time ban on a segment of the population if it were to protect the donor’s health.
Why would this exclude people who have had ME and “recovered”?
Yet again the establishment hides the true reasons for the blood ban even though it is glaringly obvious that something very unpleasant is being hidden.
All ME patients and their carers should know that the reason for banning blood donations from ME patients is to protect (albeit belatedly) the blood banks in this country – at best as a precaution against infecting people with a virus/viruses implicated in causing ME,
perhaps more likely to avoid the litigation of which we have warned the CMO.
Eventually the full story will be heard.
In the meantime we shall be enquiring as to whether this ban
applies to organ donation as well.
Impact Factor and Research
Impact factor scale - http://en.wikipedia.org/wiki/Impact_factor
ME Business Studies
Whilst the UK authorities now believe it is unsafe for people
with ME to donate blood, and are admitting this fact by placing the lifetime ban
on donations from ME patients, so the establishment continues to act as though
nothing had happened and continue false trials and even celebrate a quarter
century of failure and misinformation.
Despite the need to prohibit people with ME from donating blood
due to the possibility of contamination of blood stocks via a viral agent from
people with ME there are still senseless studies being carried out.
Yet another study which is examining the Lightning Process
business by Dr Esther Crawley has been given funding and ethical approval
despite the underlying theme of this "training programme" which states that
people have to ignore their symptoms. How strange that this study can go ahead,
using children, when it is clear that the patients' health is not of paramount
importance. The study protocol is available here [http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/smilestudydocuments/smprotv6final.pdf].
Here are just a few observations from the study protocol.
This study uses school attendance as an outcome measure. We know from experience that school attendance itself means
little as children may spend all their energy in getting to school and not learn anything. What is the purpose of education? Is it important that children, however sick, just sit in a class room to
boost statistics by ticking the attendance sheet or is it important that children are given the opportunity to learn in a way suitable to their illness?
It must be confusing for the participants of this trial when they know by now that they are never allowed to donate blood because it might affect their health but the LP trial they take part in tells them there is nothing wrong with them,
that their bodies are just thinking they are ill so they must stop the vicious cycle, the adrenaline loop. Why can’t they donate blood if they have been successful in stopping the vicious cycle and cured themselves of ME? No doubt we’ll soon learn the explanation to this from the LP practitioners
as the earnings from vulnerable people are boosted by fickle media coverage
The involvement of a supposed children's ME
charity in this farcical study is shameful.
ME Business Studies
Normally we wouldn’t highlight anything or anyone whom we feel is irrelevant for ME patients and their carers. Here is an exception. Even with a ban on donating blood for ME patients, extensive biomedical research showing the organic nature of the illness and more and more doctors and researchers shaking off the misinformation of the past – still we see the establishment continuing to act as though nothing had happened.
Now Barts celebrates their view of a CFS/ME “service” - celebrating
25 year anniversary
by hosting a conference consisting of presentations from, amongst others, Simon Wessely, Esther Crawley, Peter White and Trudi Chalder (“What makes therapy work”).
A look at their program (http://www.manchestercfsme.nhs.uk/document_uploads/Conferences_Training/PROGRAMMElmdt29112010.pdf
) shows everything that is wrong with the way this organisation, and their supporters, treat this disease and the patients who have it.
With the government spending review continuing perhaps this particular conference might well be seen to provide proof of one organisation which could happily be included in the spending cuts –
with a clear benefit to the public.
Click here for further reading
Knowledge or Belief
IiME may have been critical of the CMO, MRC and other establishment organisations
in the past. But the criticism has been based on what we have seen.
Actions will always speak louder than words.
Above we can read of funding and resources being provided to two dubious trials
– the PACE trials and the Lightning process business – neither of which will benefit
people with a neurological illness such as ME.
One of the main criticisms we have had relates to the inconsistencies used by establishment organisations regarding ME.
To our knowledge the GMC has failed to criticise or even comment on the
Lightning Therapy business training programme being used to treat patients with
a neurological illness nor taking any action against those who dismiss ME as a
behavioural illness and treat it accordingly, or ignore it and the possible
co-morbidities associated with ME. Neither does it comment on flawed research
being performed under the guise of serious science. Yet the GMC instigate the banning a doctor who attempts to treat ME
from a biomedical viewpoint – Dr Sarah Myhill (http://www.bbc.co.uk/news/uk-wales-mid-wales-11550075) – using the excuse supplied by GMC panel chair Dr Peter Maguire that
"The circumstances which bring patients to your (Dr Myhill’s) practice by their very nature make your patients vulnerable, notwithstanding any actual health issues.”
“The panel has been extremely concerned by your possible lack of understanding of the requirements of modern day best practice, as well as a seeming lack of perception and understanding of the consequences of your actions."
The hypocrisy and inconsistency is astonishing.
Read this article from Margaret Williams -
Perhaps new changes being brought in by the coalition government may help people
with ME. According to Secretary of State for Health Andrew Lansley -
|"Patients should have choice at every stage of
the journey - where they register with a GP, where they go for
tests, who they see for treatment, and what care or treatment they
receive from any willing provider.
"Above all, they should be able to change these
choices at any stage."
It will be interesting to see if and how this will affect people
with ME and their families.
With the flawed and discredited PACE trials being published it is crucial that people are ready for the spin from these trials which will be put forward by organisations such as Barts, the establishment, the media and by those charities which continue to support the non-science of the psychiatrists, or who sit on the fence.
The first in a series of papers coming out from the PACE Trial has been published in the Journal of Royal Society of Medicine.[http://shortreports.rsmjournals.com/content/1/4/28.full].
This paper gives an idea of the patients being put forward for the PACE trials. The article shows that either GPs are incompetent in screening patients for these trials or the Oxford criteria select patients with high rate (56%) of psychiatric co-morbidities.
Jason et al. have found that the Canadian Consensus criteria select cases with less psychiatric co-morbidity and more physical functional impairment and fatigue/weakness than the Fukuda (CDC 1994) criteria let alone Oxford criteria. [Jason LA, Torres-Harding SR, Jurgens A, Helgerson J. Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome. 2004; 12(1):37-52.
“The participants' median age was 35 years (interquartile range 29–43). One hundred and two (76%) participants were women. Seventy-six (56%) participants had a co-morbid psychiatric diagnosis, confirmed by the SCID. Of these, 42 (31%) had a major or minor depressive episode, 15 (11%) dysthymia, 47 (35%) an anxiety disorder, three (2%) obsessive compulsive disorder, eight (6%) post-traumatic stress disorder, 11 (8%) social phobia and 20 (15%) a specific phobia. Several patients had more than one co-morbid psychiatric diagnosis. At baseline, 40 (30%) participants were taking an antidepressant and three (2%) were taking St John's wort. One patient was taking both an antidepressant and St John's wort.”
"Conclusions Doctors assessing patients in a chronic fatigue
syndrome clinic miss psychiatric diagnoses more often than
misdiagnosing them. Missed diagnoses are common. CFS clinic doctors
should be trained to diagnose psychiatric disorders."
Jason LA, Torres-Harding SR, Jurgens A, Helgerson J. Comparing the
Fukuda et al. criteria and the Canadian case definition for chronic
fatigue syndrome. Journal of Chronic Fatigue Syndrome. 2004;
It is difficult to imagine research into any other illness choosing a patient group which was defined by such loose criteria as the Oxford criteria. It is
the equivalent of studying brain tumours and accepting everyone with a slight headache to be part of the study.
The NICE guidelines for ME are to be revisited in December to ascertain if they need to be revised.
With NICE having been taken to a Judicial Review by patients with ME and with all UK ME organisations crticising the NICE guidelines (save for those establishment charities which have accepted money from the government to support their policies) one would think it obvious that these guidelines need to be completely revised.
Yet it is stated that the previous GDG members will be reviewing the guidelines.
This seems macabre. We believe the previous GDG group needs to be supplemented
with new stakeholders to represent the more current views.
There is little doubt that the NICE guidelines need to be upgraded to include
results from biomedical research - something which the previous GDG failed to