This is a very full report by Daphne Caton of the ME Association’s ME Question Time event which was hosted by the Shropshire ME Support and held in Shrewsbury on 6 October 2012. It’s taken from the Shropshire Group’s November newsletter, a copy of which can be downloaded by clicking HERE.
We had a good and well attended event on Saturday, 6th October. The panellists were charming and approachable, and ensured that they answered us clearly and fully. Dr Speight’s outspoken and humorous comments were received particularly enthusiastically! The panellists took turns to answer on different aspects of the questions in their individual specialities and were obviously at ease with each other. It was such a successful meeting that it ran on until nearly five o’clock instead of finishing at its appointed time of four o’clock!
We were very pleased that so many people had managed to come: there were visitors from all the surrounding counties as well as from parts of Birmingham, Oxford, Bristol, Dorset, Bucks and even Yorkshire! The whole event was recorded and the DVD is available for loan from our library.
Peter Ruberry gave an introductory address to welcome everyone and introduce the panellists. He announced his imminent departure from the SMEG committee and thanked the MEA for helping to celebrate our 25th Anniversary. He spoke about his own experiences with ME and later presented the co-founders, Reg and Jo Watson, to us from the audience.
When the microphone was handed over to Dr Shepherd, he outlined the course of events. First he went over the items on the sheet previously distributed about the recent preoccupations in the ME world, giving the latest news and developments as appropriate:
ME Question Time in Shrewsbury
HOT TOPICS – which may form the basis for some questions…
BENEFITS – Harrington Review of WCA descriptors – DLA switch to PIP in 2013
MANAGEMENT and EDUCATION – NICE guideline on ME/CFS review in 2013 – Rituximab – need to replicate the trial – CS presentation to GP conference in mid Wales last week – included Shropshire GPs
PARLIAMENTARY – APPG on ME and Forward ME Group
RESEARCH – MRC initiatives: Expert Group on ME/CFS; grants X5; highlight notice includes ‘neuro-inflammation' – UK ME/CFS Research Collaborative – first steps – ME biobank and post-mortem tissue bank + patient database 5 ￼- XMRV-time to draw a red line and move on
SERVICES – ME/CFS clinics under financial pressure – Health and Social Care Bill: GP commissioning in 2013.
On the first item, Dr Shepherd told us that the amended descriptors were to be tried by the DWP to see if they were fair and effective for PWME. The other up-date was that there is soon to be a meeting with the Telegraph and the Times to discuss their coverage of ME news in their newspapers.
He introduced the panellists who spoke briefly about themselves and their involvement with PWME.
Dr Speight (NS) joked that he has not been allowed to retire! He is still the consultant paediatrician for the Tymes Trust and AYME. He made his position clear in stating that misuse of the Mental Capacity Act allows for bullying of adults as well as children and mentioned a recent case where a PWME had been imprisoned for five years.
Dr Myhill (SM) is a GP who treats many PWME. She wants the answer to the question “Why?” people have ME and outlined her approach to treating ME with her analogy of the human body’s function with that of a car as explained more fully in her CFS book on her website. The essence is that if you get the diet and gut function right this should lead to recovery. She thinks she has the right questions but does not yet have all the answers.
Simon Toghill (ST) gave information on his role of Occupational Therapist in SET (Shropshire Enablement Team, our ME/CFS service.) The rehabilitation service they offer is in five disciplines: psychological, neurotherapy, physical, speech and language and diet. He stressed that there is no medical support now.
Jane Colby’s (JC) focus is on education and she runs the Tymes Trust. She explained that she is an ex-headteacher who had a severe case of ME. She deals with many child protection cases and mentioned that 70 families who were helped recently were found innocent. She showed us the poster that was available at the back. They are working on new guidelines on education for children with physical needs.
The effectiveness of spot tests for Epstein-Barr Virus (one strain of glandular fever) was queried. The questioner’s 18-year-old daughter, ill for nine years, had had negative tests at five and 14 but has now been diagnosed as having ME as a result of EBV.
NS wanted to know what the latest test actually was but it was not known. He suspected that the GP was fastening on a recognised disease from the history that avoided using the dreaded term “ME.”
CS said that EBV is known as a common trigger for ME but that the history of the illness, which can be difficult to interpret, is secondary to effective management and treatment now.
SM said that viruses in general are well known for switching on fatigue as they are for switching on auto-immune diseases and agreed that the actual history may be not be very helpful in dealing with its results. The actual mechanism – perhaps on mitochondria – is not known but could be by means of allergies affecting mitochondrial function. She mentioned that Dr Lerner (USA) is looking into similar effects of post-EBV infection which might produce useful information.
JC said that Dr Dowsett knew more than anyone else about ME and described a complicated association between EBV and ME. EBV can be mimicked by enteroviruses which are good at producing long-term symptoms whereas EBV is usually of a shorter duration.
The lady had been told that malaria is “the biggest” trigger for ME and asked whether a special thyroid test might be helpful.
CS talked about the three stages of ME: predispose; precipitate and perpetuate. He said that any immune stressor could precipitate it, not just viruses but vaccines, his particular area of interest, especially Hepatitis B vaccines, but also salmonella, dengue fever, etc. His personal view was that the thyroid is not necessarily involved. He wouldn’t treat PWME with thyroxine as he has seen no evidence of it being needed.
SM said it is part of the “story.” Doctors tend to treat blood test results and not patients. She gave the example of T4 where anywhere between 12 and 22 is “normal.” Most healthy people have been found on repeated tests to have a range within a couple of points inside the normal range which is normal for them. A result of 12 or so may not be normal for the PWME being tested so a slightly higher level could help. In addition, there is the consideration that conversion from T4 to T3 might be the problem or other parts of the system may have poor converters and be blocked. She cited the case of Diabetes Type 2 where there is plenty of insulin being produced but because of hormone resistance against the receptors, it is not getting to where it is needed. Random testing has shown that hormone receptor resistance has led to Diabetes Type 2. Also, in those with high loads of pollutants, e.g heavy metals, PCBs, etc. there were 38 times the number of people with diabetes.
There has been no good study into the effects of endocrine function in ME so the only way forward is very careful trial and error to find the dose that will overcome the resistance.
CS agreed that more research on thyroid function in ME/CFS is needed and stressed the dangers of treating people with thyroxine if their cortisol levels were low.
Dr Skinner’s abandoned research on this was mentioned from the floor. [Dr Skinner risked being suspended by the GMC more than once for using his clinical judgment in prescribing thyroxine to patients who were very glad of his expertise and were greatly helped by it. He has been called again to appear at an IOP hearing on 9th November, 2012. Ed.]
CS said he would welcome detailed study in this area in a large cohort by endocrinologists.
NS endorsed SM’s comments and said that as we have so little to offer PWME, he advocated listening to patients and being brave enough to try treatments. He told the story of a Scottish doctor who wanted to treat a man for Lyme disease. The man had been told he didn’t have Lyme disease so the GP gave him the antibiotics but claimed he was treating the patient for acne!
CS said that clinical judgment was being eroded. Doctors need to focus on treating their patients but, if it means straying from NICE guidelines, they faced serious consequences.
NS said that doctors should be brave enough to put their patients first.
JC told the story of a PWME who was denied thyroid treatment despite her condition steadily worsening over a number of years. When it was finally looked into, her thyroid gland was dying so it is important to keep watching.
CS advocated proper thyroid tests every one to two years for PWME, particularly if over 50, as ME affects the thyroid.
NS suggested that any new or worsening symptom should be checked and not just assumed to be part of ME.
Is there a higher incidence of thyroid cancer amongst PWME as Byron Hyde has suggested?
CS thinks not. There have been cases of other cancers, e.g. breast cancer, reported but no thyroid cancer in all the patients he has treated or through the MEA.
SM agreed: she had only come across one incidence of thyroid cancer among her thousands of patients.
Advice was sought on the options in the ESA application form for proving relapse on repeated activity.
CS explained that this is a key part of the WCA negotiations as the tick-box system doesn’t allow for fluctuating conditions. He referred to the report on the WCA descriptors submitted to DWP minister, Lord Freud, that activities have to be capable of repetition.
The recommendations for reform are on the MEA website in full and are now in testable form but will not be used by Atos until the results are in for discussion by parliament so will not be implemented before the middle of 2013 at the earliest. You need to be able to do the activity “reliably, safely and in a timely manner and you should be able to repeat it.” If you can’t, then the recommendation is that you be classified as unable to do it.
In the meantime he advises challenging their decision on appeal using the information from the MEA about this classification of not really being able to tick those boxes and supplying supporting medical evidence. There is a high rate of success on appeal.
NS said that if a doctor is unsupportive by serving their paymaster before the good of their patients then they are guilty of unprofessional conduct and you should refer the documents to the GMC.
CS further commented that 8-10 Atos workers had already been referred to the GMC and went on to mention the APPG meeting with Atos scheduled for the following week.
JC remarked that Atos interviews should be recorded as people are more likely to be careful in their behaviour if they know they are accountable. She also pointed out that they have a welfare rights officer at Tymes Trust who can help and that the SMEG website has very good advice.
CS commented further that Atos doesn’t bother about considering medical backing which is even more difficult where there is no consultant or you have an unhelpful GP.
ST confirmed that Shropshire has no medical consultant for ME who could supply supporting statements and that SET doesn’t often get asked for medical evidence.
CS talked about an Occupational Therapist in Leeds who has given support in certifying what patients are not able to do.
SM said that she is heavily involved in providing documentary support for her patients. She praised the expertise of the laboratory she uses and briefly described her recent research papers on mitochondrial function. As these test results give an objective measure of mito dysfunction which correlates with the patients’ experience, they are very useful for this purpose.
A member of the audience said that her daughter had been put into the work group although bed-bound. How can you be put into the support group by Atos when you’re not of retirement age or have only six months to live?
CS pointed out that Atos assessments depend on the tick-box responses and that they don’t look at the medical reports unless made to. He repeated the advice given above and that you must go in person to present your case.
ST recommended seeking advice and help from A4U and the CAB in filling in the form and putting your case across.
Before the second half NS presented the DVD “Voices from the Shadows,” calling it “a horror story.” [I reported on this briefly on page 8 of the October issue and gave the website where you can buy copies.] It is a powerful film about severe ME and is very moving.
Before posing the question the speaker gave a vote of thanks for the SET course which she recommended to others. The question was for information about the work of the charities on biomedical research.
CS explained that there are many charities involved with ME which are funding research. He outlined the focus of the British charities. Examples are the IiME initiative for an ME centre in East Anglia and the MEA involvement with the Biobank and post mortem tissue bank and the research being undertaken by The CFS Foundation into genetics and gene expression.
CS talked about the Rituximab research to be funded by charities including the MEA working together in the new ME/CFS Research Collaborative. The cost of £300,000 is too high for just one charity! The drug itself is also very expensive.
JC made the point that even when results of ME charity-funded research are published there is prejudice against the findings precisely because of that. She gave the example of the research on the blood of children with ME at Newcastle University by Dr Newton, which had no input from the Tymes Trust apart from the funding, being treated with suspicion.
CS said research is very expensive. Examples given were that the typical cost of a research project is £300,000 and the Biolab has cost £160,000 so far with another payment of £160,000 needed for the second stage. This level of outlay is not sustainable indefinitely. Another problem is that there just aren’t enough researchers in this field.
NS pointed out that it isn’t really the job of charities to fund such research particularly in view of what has been lost by PWME through Atos’s agency. He talked about Rituximab being a very interesting drug used in rheumatology, etc.
CS gave the history of the discovery by the two cancer specialists, Drs Fluge and Mella, in Norway that Rituximab seemed to cure ME after three months of treatment with Rituximab for cancer of the lymph gland. It’s not known why and there is speculation that it might work by attacking B cells. These are responsible for auto-antibodies that may be reactivating ME symptoms or may be a reservoir for the infection leading to its perpetuation but much more research is needed because the potentially severe side effects – including death!
JC questioned the delay in its effects and CS and NS concurred that that could be an argument against Rituximab working as speculated. We’ll have to wait for the results of the research.
A mother asked how she could increase the six hours only home tuition that her 13-year-old daughter was allowed.
JC quoted from Dr Dowsett that there are five strands to treating a child with ME:
1) They should rest until they are over the worst
2) All stressors should be removed
3) They should be allowed to keep in touch with their peers
4) Their best time of day should be selected for education
5) The number of hours of tuition should be dictated by the child’s need
Here she referred to the guidelines being negotiated for the special needs of sick children that allow for individual cases. She explained that the rules on sick children are separate from those for children with special educational needs. If necessary, legal aid should be sought where there was a conflict and the Tymes Trust can offer help and advice on all this.
She said that you shouldn’t believe a “no” answer unless it’s according to the law and gave the example that it is often claimed that home tuition can only be allowed on a consultant’s recommendation. This is not true and in any case, children are unlikely to be seen by a consultant in the stipulated 15 days of illness.
She advised contacting the Tymes Trust.
NS asked to “have another word” with her and her daughter before they left.
JC showed a relevant booklet with Dr Dowsett’s views under a different name.
Comment rather than Question
A mother of a child with ME aired the educational myth that children can’t catch up if they miss school. They can. She added that she had found that Shropshire teachers have been flexible and supportive.
The questioner’s doctor refused to use the term ME and she wanted to know about the difference between ME and CFS as ME is so much more than just fatigue.
CS gave his view that CFS is as inappropriate for ME as calling Alzheimer’s disease “Chronic Forgetfulness Syndrome.”
CS gave the history of the change in the 1980s to include ME along with disparate other illnesses in the umbrella term of CFS. There was conflict over the “Encephalomyelitis” part as it was argued that not everyone deemed to have ME actually had inflammation of the brain and spine with some psychiatrists even trying to persuade us that the illness was psychological. Doctors tend to prefer CFS and patients ME.
NS recommended quoting the CMO’s report in 2002 to doctors where he said that it was reasonable to use the two terms together as ME/CFS.
JC said that you have a practical term and sometimes you have to quote documents where CFS is used. She then read out from the 2011 International Consensus Criteria, which she pointed out was formulated by professors, virologists and medical professionals in other countries:
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3.)
She went to say that the term “ME” is still being used and should be preserved and that there is discussion of sub-groups in CFS… However, she further quoted from the 2011 International Consensus Criteria:
No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same time for several days.
This neurological fatigue is the classic, post exertional fatigue felt in ME which is particular to this disease only.
CS said that looking into neuropathology is one reason for the post mortem tissue bank. Four or five post mortems have been done and only one case of dorsal root ganglionitis (inflammation in a bundle of nerves outside the spine and the peripheral nerve system) had been found but no evidence of encephalomyelitis (brain and spine inflammation.) This could explain the sensory symptoms of tingling and pain. These are also symptoms of Sjögren's syndrome which involves peripheral neuropathy.
SM felt that too much energy has been expended on looking for an appropriate name when the real matter is “Why?” What are the underlying pathological reasons for this disease? Byron Hyde has done functional brain scans on PWME which have shown holes in the brain like those caused by stroke: energy was just not being supplied there for those parts to function. However, structural scans fail to show up any problem. Again she used the analogy of a car: with defective spark-plugs it wouldn’t work but would look fine. Therefore, she doubted that PM studies could be very helpful because the problem is at cellular level. Heart failure, for example, is the result of mitochondrial disorder even where the blood supply is inadequate. If the mitochondria are not supplied with adequate energy or can’t convert it to O2, ATP, etc. then the heart muscles cannot contract properly. PMWE have low cardiac output: this explains their low blood pressure, feeling better when lying down and having POTS.
At rest the brain weighs just 2% of the total body weight but uses 20% of the body’s energy; if it is not delivered then the brain can’t work properly so cognitive dysfunction results. The eye works 10 times as fast as the brain so severely affected PWME don’t have the energy for the conversion of photons to images to the brain so intolerance results. She thinks that energy delivery is behind these fundamental lesions in the brain.
CS Agreed that mitochondrial function is important and mentioned the muscle biopsy done on his leg but that we still need to look at PM tissue for more information on the pathology as well.
JC picked up on the mention of Byron Hyde who considers the name ME as important. She quoted that 30 years ago a set of tests were performed on patients presenting with suspected ME but after use of the term CFS these are no longer done. The conclusion is that doctors thought ME an important disease but not CFS.
CS agreed that there is hostility to ME by doctors but this can only be reversed by pathological evidence to support it.
JC joked that we must educate them.
CS, also jocularly, commented that we need the evidence in order to do this.
NS said we wouldn’t need this evidence if we could find a cure. You wouldn’t see the psychiatrists for dust! This caused hilarity and applause in the audience.
There was a long preamble apparently from someone from Oxford who was not easy to hear talking about the IACFS/ME Treatment Primer “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners” It is freely available on the internet, as are the International Consensus Criteria but how can we get GPs to read them?
JC said that GPs are vital as ignorance can cause more harm than help.
CS said that there is slow progress in educating GPs. He spoke about his recent meeting with about 150 GPs in Wales on chronic pain and CFS. They showed interest and no hostility to ME, wanting to know how to manage this illness.
Barbara Stafford interjected that if anyone had a GP who needed or wanted to know more about treating ME, we should let Tony Britton have their name and address. She went on to mention the MEA funding campaign at Christmas to send the educating booklet on ME to GPs.
NS remarked that if we have a good GP we should reward them by giving them presents e.g. champagne at Christmas!
Does the panel think there is anything useful to us in the so-called “secret files” on ME at Kew?
CS explained that the files were closed rather than secret. The DWP ones are now open but not the MRC ones, which he thinks are unlikely to be opened in the near future. From those already seen he suspects there are just embarrassing comments in the correspondence (very often with him!) that they contain rather than an attempt to hide actual secrets or to suppress information on a cure.
A further question was whether organophosphates were mentioned in the files to which the answer was that there was no mention.
JC started to talk about a statement she has from the Royal College of Psychiatrists but had to be interrupted because Dr Speight had to leave at 4.30 to catch his train. He was given rousing applause by way of appreciation for his support for PWME.
CS picked up the theme again to explain that the files from the 90s show his battle to get ME accepted as a neurological illness by the DWP. It had been so defined by the WHO in 1969. This was so that benefits could be paid and for influencing guidelines. His protagonists were psychiatrists but the WHO classification was accepted in the end.
Advice on PWME having flu vaccinations has been that some react adversely and some benefit so it’s probably better to avoid them. Following Dr Mercola’s report that having flu jabs can lead to added risk of new flu strains like Swine flu, etc. is there any reason to change this advice?
CS gave MEA’s general advice as outlined in their leaflet on the website which in turn resulted from a website poll. On balance, it’s better not to have a flu jab unless there are risks from heart disease, etc. in which case PWME should weigh up the pros and cons.
SM said that vaccinations can trigger ME or make it much worse so she is chary of jabs – even advising PWME who need vaccinations for holiday destinations to choose somewhere else to go so that they can avoid them! A better course is to increase your protection through nutrition. Of particular benefit is vitamin D3. We need the equivalent of half an hour’s Mediterranean sun each day. As this is not possible here, we need to take supplements. You can now get a D3 test on the NHS and her acceptable level is between 75-200. She recommends taking at least 2000, but better, 5000 recommended the Vitamin D Council website where they give information on the health benefits of Vitamin D3 for guarding against heart disease, cancer and so on.
At this point there was an interjection from the floor asking whether there is a link between ME and SAD (Seasonal Affective Disorder)?
SM replied to this one as well. She said that both are affected by broad spectrum light deficiency. It is known that the further from the Equator you live, the greater is the risk of autoimmune disorders.
CS pointed out that a D3 test forms part of the tests recommended in the Purple booklet and that D3 is particularly important for those who are deprived of exposure to sunlight because of being bed- or house-bound.
JC concurred with the advice against vaccinations, particularly when it was easy to avoid exposure to the infections being involved and when there was already an infection present. An example is of a polio vaccination that contributed to a case of polio and made it very much worse.
ST said that he wasn’t a great one for vaccinations as he didn’t like needles anyway!
A further comment from the floor was that a request for a D3 test produced a rude response and the statement that: “We don’t measure that.”
CS explained that as it’s not proscribed in the NICE Guidelines, doctors aren’t obliged to offer them so it’s a case of persuading your GP to do one.
This concerned sleep reversal in a child; the cause and any suggestions for coping with it were requested.
CS asked whether any expert advice had been given and was told that it had but it hadn’t worked. CS said that this was a common symptom and that research was being done on a new drug for children with severe sleep problems. Had melatonin been tried?
It had but made no difference.
CS advised seeking a referral to a sleep laboratory and explained how this worked by hooking up the patient to monitors which could measure what was going on.
The mother had asked for this but been turned down.
SM said there was no easy cure for sleep difficulties which could produce feelings of permanent jet-lag. She mentioned the adrenal stress test where hormone levels are measured to determine sleep details and gave examples of timings and levels of T3 that control when we feel sleepy and when we feel wakeful. These endocrine secretions need to be in tune for the body to function normally.
JC said that this problem is typical of a child with ME but if possible, we should try to live with the child’s rhythm to ensure that they can sleep when they need to. It resolves itself in time and it’s cruel to wake the child up unnecessarily when they desperately need sleep. It’s just a practical problem and shouldn’t be thought of as anybody’s fault.
The meeting ended at 4.45. CS thanked everybody for their interesting questions and thanked the panel for taking part.
SMEG Chairman, Jonathan Kidson, thanked the panellists for their answers to difficult questions and the MEA for holding the meeting in Shropshire. There was loud applause for the panellists and Jonathan thanked SMEG members for coming and the Shropshire Disability Network for their presence and added support.