Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Feb 17, 2017.

  1. Freespirit


    If a patient, or group of patients (hate that word!), harmed by get were to sue the 'treatment/care' provider and won, would that be evidence? If so a no win/no fee or pro bono class action would be a good idea. Don't know how strict the criteria or burden of proof wld b
  2. ukxmrv

    ukxmrv Senior Member

    When I took legal advice I was told that in the UK it would be a "balance of probabilities". There are huge barriers though towards this happening or any sort of legal medical cases as I found when looking at a family members problem. It would have cost around £5000 in fees to even get a lawyer to consider this and that was not uncommon.

    One of the big barriers in the UK is trying to find a lawyer to act for a PWME. That's why it isn't happening. There are PWME who have put together what they think is a case but have not been able to find a lawyer to act for them.

    The Judicial Review into NICE has put off some lawyers and been a lesson to patients on how badly things can go in court.

    There has been one case of a PWME suing either a hospital or a medical consultant but that was settled and a gagging order put in place. Highlighting the risks once again for a PWME to get justice.
    Last edited: Apr 17, 2017
    Laelia, Valentijn, boolybooly and 2 others like this.
  3. NelliePledge

    NelliePledge plodder


    This update shows they have got 5 MPs to sign up to the campaign - MPs adopted by someone who has committed to face to face lobbying shown as well as MPs who have signed up to support the campaign. There is a list further down the page

    If more MPs are signed up this seems like a reasonably effective way of getting the message across and should be adopted more widely for campaigning about ME. We want MPs to start raising ME as an issue with NHS/DoH and with party leadership.
    Last edited: Apr 25, 2017
    alex3619 and Laelia like this.
  4. Avenger


  5. Avenger


    Dear Dr. Shepherd,

    Dear Dr. Shepherd,
    the reason for writing concerns abuse in ME/CFS. I have been diagnosed with ME/CFS and even Fibromyalgia during 18 years of illness, but was recently diagnosed with D-Lactic acidosis secondary to Bacterial Overgrowth which had been the cause of serious neurological symptoms since I fell ill. I expect that you have seen 'Sheedy' abstract concerning 'increased D-Lactic producing bacteria found in CFS patients'. I am evidence of D-Lactic acidosis without short bowel syndrome (Sheedy's abstract below for those who have not seen it). I am receiving treatment for the condition. If I can have D-Lactic acidosis due to Bacterial Overgrowth, there may me many more and I have already been contacted by other ME/CFS who have been diagnosed (after living with this for so long, my own belief is that there may be a number of combinations of Overgrowth; IBS being one form of Overgrowth that can be treated with antibiotics, and that there may be different combinations of Overgrowth causing a range of illness through the metabolites that they produce. Antibiotics alone can select for overgrowth due to resistance and decimation of symbiotic colonies depending on the properties of different antibiotics. But there can be many other causes including Diabetes and causation may be far more complex or due to a combination of factors).

    But this is not the main reason for contacting you, which is Abuse in ME/CFS. I have found something in my records that most of us will not have access to and it concerns the reason for 18 years of abuse after being diagnosed with Somatization Disorder at the same time as ME/CFS in 2001. I am now going through the Ombudsman and taking advice from Solicitors.

    My records to all Services have now been annotated by my Doctor to the effect that I was misdiagnsozed with Somatization in 2001, because the Hospital continued to treat me as though everything was Somatic even after I had a full diagnosis of D-Lactic acidosis explaining my symptoms since I fell ill. The annotation has given me access to a document that I had not seen before.

    The annotation showed my 'Significant Medical History' which is a document seen by all Services including A&E, OOH's, Doctors and Consultants, Ambulance etc. I found that I had been given a Somatization Disorder with 'lack of insight' at the top of the page. I knew that my illness had been diagnosed as Somatizaion in 2001, but i did not know why I was never taken seriously during sometimes serious episodes of illness, including breathing difficulty with hyperventilation (a natural response to acidosis), systemic illness, with abnormal muscle pain, weakness, abdominal pain, tachyarrythms and periods of slurred speech, dizziness or confusion and even seizure.

    When I made a Hospital Complaint to the NHS Chief Executive after the D-Lactic diagnosis in 2017, my reply from the Consultant who gave me the Somatization and failed to make a diagnosis in 2001 was that the Somatizaion would not have influenced my care for so long. When I saw the annotation to my 'Significant Medical History' I realized that they have lied and new full well that this statement had existed to all services.

    My care has been atrocious and on one occasion with breathing difficulty I was left to suffocate in a private room on my own for over 9 or more hours before seeing a Doctor, with no observation or investigations or even being offered a drink. I have been seen in A&E very unwell and during hundreds of exaccerbations, refused care by Doctors at my last Surgery and had been sent home without seeing a Doctor because Staff at my Hospital had become complacent that my symptoms were Somatic. I would have fared better at Guantanamo Bay.

    I do not know if this is similar to other with ME/CFS, but I had felt too humiliated to talk to anyone until now.

    I am suggesting that all who have been mistreated or told they are Somatizing and diagnosed with ME/CFS or Fibromyalgia should check their SMH and demand a copy under the freedom of information act.

    I had investigated my own illness and paid to see a D-Lactic Consultant. I also had to investigate my own records to understand what had happened and what been investigated, after realizing that I would not get any help from the NHS (I was so ill at times that I had expected to die). I now understand that the Somatization has been a major factor in my not being taken seriously by Doctors. I found that a former Doctor (one of three Doctors who stated that I was not Somatizing and who asked for Blood Gas investigations back in 2003) had written to A&E asking for Blood Gasses and investigations, but despite the request were never actioned when I was ill in A&E over the 18 year period. I also found that the Head of A&E had been advising (I have written evidence) that I should not have investigations during one episode because 'this was a repeat episode of a longstanding problem already fully investigated'!

    With D-La all other investigations can be normal.

    Even after I have been diagnosed and receiving treatment, the abuse has continued when I went for Shoulder Surgery in 2017 which had been delayed for so long that I had to have bone anchors placed some way below where they should have been attached to repair the tears. But when I came out of Surgery Hospital Staff refused to take my diagnosis seriously and gave me frequent Sugars in Medication that were contraindicated for D-La and I fell ill. My treatment for D-La has been to stop (reduce to as close to O%) for all Carbohydrates and Sugars because D-La causes the production of D-Lactic acid which is a poison or toxin and can be found in spinal fluid to cause illness and neurological symptoms. This was the reason why my Doctor annotated my records and has shown that the NHS have lied and tried to say that the Somatization would not have affected my treatment because it was given so long ago .

    The same NHS Chief Executive who answered my complaint after the D-Lactic diagnosis then stated that I did not have such a diagnosis, and a Shoulder Surgeon then stated on their behalf 'that it would not be necessary to take D-Lactic acidosis into consideration for surgery because I did not have such a diagnosis' after noting that I was being investigated for D-La (I have a full diagnosis). I am still fighting and I believe that they are acting not with compassion for patients on their behalf but as Solicitors.

    I thought that years of abuse would be over. I am shocked and disgusted that they can operate in this way.

    We need to catalog this abuse. If like me you felt too humiliated or embarrassed, it is time to speak out.

    Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
    Sheedy JR1, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, Stapleton DI, Butt HL, DE Meirleir KL.
    Author information

    Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5 x 10(7) cfu/L and 9.8 x 10(7) cfu/L respectively) were significantly higher than those for the control group (5.0 x 10(6) cfu/L and 8.9 x 10(4) cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from (13)C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.


    [Indexed for MEDLINE]
    Free full text

    MeSH term
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  6. Avenger



    The possible reason that ME/CFS has remained hidden for so long: My belief based upon my own symptoms and what many of you have written is that Bacterial Overgrowth may be acting as a hidden infection because it remains in the Gut as Overgrowth of Bacteria (many of which are found in a normal balanced microbiome), but the metabololites produced poison the host without activating the immune system causing Flu like symptoms and in some cases extreme illness without producing a rise in temperature: Doctors have misunderstood these 'infections' because they expect a rise in temperature with an infection and many other investigations can be normal.

    I have already stated that my belief is that there may be a number of forms of Bacterial Overgrowth and combinations of opportunistic Bacteria, that IBS is a more benign form of Bacterial Overgrowth and that D-Lactic acidosis may be the cause of neurological symptoms for a subset (evidence from the Australian research team. Sheedy et al).

    I now believe that D-Lactic acidosis is a form of infection but without giving rise to a temperature, because the immune system is not activated, and this may be why it has been misunderstood for so long in ME/CFS. Many ME/CFS describe Flu like or infection symptoms as I had.

    Criteria for infection is the invasion of an organism's body tissues by disease causing agents, their multiplication and the reaction of the host tissues to infectious agents and the toxins they produce. In D-La the infection is due to Overgrowth multiplication that remains in the Gut, but the toxins that cannot be metabolised invade the hosts tissues without giving rise to any temperarure because the immune system is not activated as it would normally be in an infection. I had frequently described infection to my Doctor but without it being understood.

    With D-La the host feels the symptoms of infection (Flu like) without any change in temperature. Doctors who are trained to look for temperature are blind to the underlying cause, because it breaks the rules and appears as though that nothing is happening except psychologically and will then blame the patient. The signature for Bacterial Overgrowth and D-La will not be found in conventional investigations made by Doctors with little training or imagination. Gut Bacteria and the metabolites produced in Bacterial Overgrowth are an undiscovered continent that urgently need research.

    With D-La the infection is caused by Overgrowth of a particular Species producing the toxin D-Lactic acid (and there may also be other metabolites involved with unknown attributes found by Sheedy).

    The reason that this has been misunderstood for so long is that although you get the symptoms of an infection such as Flu like, or Infection like symptoms, D-Lactic acidosis generates no change in temperature (I have also describes for 18 years as Flu like, Infection and poisoning). Every time that i was unwell Doctors took my temperature. I diagnosed my own problem when I realized that no one would help me or were even interested in what they perceived as a psychological problem.

    Doctors do not understand infection unless it comes with temperature. In D-La you have all the symptoms but no temperature. Many of you have reported the same lack of temperature in a number of threads.

    My belief is that Bacterial Overgrowth barely describes the condition and should be viewed as an infection (and there may be more than one form of Overgrowth. IBS has only recently found to be related to Bacterial Overgrowth). Sheedy found two D-Lactic producing Bacteria, but Fungal infections such as Candida also produce D-Lactic acid. It may be the toxins or metabolites produced by Bacterial Overgrowth that causes illness and Flu like symptoms in ME/CFS for at the least a Subset.

    There are a number of causes of Bacterial Overgrowth including the overuse of starches and sugars causing Diabetes and insulin resistance. My belief is that the overuse of antibiotics in medicine and agriculture can also select for different forms of Bacterial Overgrowths by selecting through resistance of some colonies and decimation of others.

    D-Lactic acidosis is also a cause of Breathing Difficulty often seen as Hyperventilation. Simon Wessely had established the lack of relationship between Hyperventilation and CFS. Hyperventilation is a natural response to D-Lactic acidosis and my belief the cause of both neurological symptoms and cause of Flu or infection like illness without temperature.


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