Can we have a poll or info gathering on how we are treated as Fibro/ME patients in the UK?

I am wondering if there is a way we can get some information gathering as to how our GPs are treating us after they start to think we may have Fibromyalgia or ME and again after we have a diagnosis. My sense of it is that there are some GPs who genuinely welcome information and awareness as well as input/discussion with the patient.

Example: I have had one Neurologist I was sent to for disturbing new symptoms just do a very basic exam and then tell me nothing useful, dismissing me with "No need for further testing" and "We can't do anything to help people with your illness" although he did not name 'my illness'. He then told me to keep singing (I am a former professional classical singer) and NOT TO READ ANYTHING ON THE INTERNET about my illness.

I find this shocking, but essentially have had nothing of much use from any of them except pain meds that help me sleep a bit most nights but don't help much with the pain, and my very kind trainee doctor who visited me until she moved on to a permanent job.

There is no way to find out if doctors in our local area would be open to having a new patient with one of these illnesses and would attempt to help us. Everywhere I connect with sufferers online, I hear stories of people who are left on their own without any significant medical treatment at all, or who just stopped trying after they were brushed off or treated disrespectfully.

I think it's important to find a way to have a voice about what we are experiencing in terms of discrimination and denial of treatment, ignorance and disinterest, and lack of options except the CBT/GET ones. Is there some kind of group action we can take that will get attention. I know the Countess of Mar is trying in Parliament, but they don't seem to be taking much notice, and education of doctors in the UK about these illnesses seems to be nil.

30 Replies

  • Scope on physicians that treat what comes through the clinic door or follow the feds with stonewalling.

    Dollars invested change how we are $5m on CFS $120m MS go figure.

  • An indication from members of the questions that should be asked. From personal experience asking the wrong / not specific questions will guide results produced.





    Are these the areas under consideration when framing questions ?

  • I specifically think we need to make it clear whether diagnosis/referral and treatment offered are of the psychosocial type, like suggesting that we are depressed and that is the cause and leaving aside all our other illness problems, or like just referring us on to one of the govt supported CBT and GET clinics.

    The MEA did a poll about treatment options, I believe. There was a government survey of treatment for ME/CFS, I think but both of these encompassed all treatments and approaches, and I feel there should be a more focused poll of how many found or saw a doctor who treated their illness as biomedical in cause and continuation--NOT simply a deconditioning or fear issue or psychological/behavioural complex that resulted from a previous illness which is no longer at the bottom of it all. One like this, I think would tell the REAL story about what's available out there.

    Perhaps also to see what is where in the country, as far as possible treatment options and GPs. I know there is Julia Newton's clinic up North... not sure of where other NHS doctors might be (Is she NHS?) I am at the other end of the country.

  • Simply are they still following NICE guidelines 2007 with a dustbin diagnosis of CFS after ruling out other possibles using Fukuda 94 criteria.

  • well yes.. AND are they going to speak to a patient using the 'game plan' of placating us by telling us that we have a 'real illness' but hiding the fact that they do not believe what we experience has its roots in an actual disease which needs treating? This is important. We don't need any more games and time wasting from doctors.

  • I see the first grants for biomedical research from the MRC as a sign that the balance of power is changing. Stigmatizing has enabled savings in care and benefits for successive governments, neglect as the cheapest option will require a great amount of pressure before it will be relinquished though this pressure is building.

  • So many doctors admittedly just don't know what to do. Many are welcoming the recent IOM algorithm for diagnosing CFS/ME/SEID, in the U.S. Yet, once diagnosed, then what? Most doctors able to treat chronically challenged patients are doctors with very good medical skills, knowledge, insight and are able to think outside of the box (with confidence).

    Another approach is to find a doctor willing to survey doctors, asking doctors to identify the obstacles to diagnosing and to treating CFS/ME. This survey was done by a doctor of Internal Medicine, as a part of his Grand Rounds presentation at a teaching hospital. He had sent the survey out 6 months ahead of his scheduled talk to other doctors. The results showed areas where education was needed. An educational medical information packet was then formulated, addressing the deficits as identified by the surveyed doctors, and the packet was emailed to all licensed physicians licensed within that state/province.

    The survey and Grand Rounds presentation was a project which had come from a very positive relationship between a teaching professor, he was also a doctor of Internal Medicine, and a member of the regional CFS/ME support group. It was felt the project would benefit both doctors and those living with CFS/ME in that region.

    Since the survey had originated from a highly respected physician, other physicians took the time to thoroughly respond to the survey.

    An interesting approach. :)

  • We have also had some good luck with locating the teaching hospitals, requesting the name of the person in charge of "Grand Rounds" and contacting that person, asking them to please schedule a Grand Rounds presentation on CFS/ME. We are often asked to make suggestions as to the speaker and also the specific areas we would like to have addressed. We have wanted the obstacles to diagnosis and treatment addressed. This has worked out completely in 80% of the requests. Often, the person(s) in charge of these educational talks are looking for topics and also for qualified doctors to speak on the topic. We help them out in that way. :)

    In both approaches with doctors, we skipped over: what are you now doing or not doing?

    We went directly into: This is what you need to know/understand, this is what needs to be done and this is how to do it. It seems to have been helpful. Fewer patients were being blatantly turned away from care.


  • In the UK, wouldn't that kind of request for someone who is competent to teach others about ME/CFS diagnoses and treatments be likely to be someone who believes that the PACE trial shone the light on what treatment helps, and aside from that, they should not 'give in' to our desire to have various symptoms treated or assessed for possible other illnesses that are treatable?

    The last thing we would want to do would be to start up something that will further propagate these theories and treatments. It seems now that the government has spent so much money setting up CFS treatment centres and programmes of exercise and CBT for Fibromyalgia, that is where all patients are going to be funneled for diagnosis and treatment. How can we bypass this obstacle?

  • The research collaborative are making inroads into the Wessely schools domination, playing politics with this illness has caused immeasurable suffering, negligence and premature deaths for which history will judge those involved.

    The past thirty years have been dominated by the psychosocial model but our future is not in looking backwards, it's looking forwards into the future empowering with information as the tide is turning.

  • Budgiefriend, yes, it makes sense to locate doctors/clinics where people can obtain adequate care.

    We are getting closer and closer to medication options, whether Ampligen, Rituxan, others. Physicians need to understand much more than many understand at this time.

    Additionally, new symptoms need to be fully addressed. People are seriously harmed or die simply because a symptom or set of symptoms was chalked up to CFS/ME, when it was something else, something co-occurring with the CFS/ME and may have been helped if it was identified. It is important doctors remain vigilant, not become complacent and/or careless/negligent.


  • That would be supported by the recent IOM report. However, how many doctors in the UK care what the IOM report says about this illness? It seems they would be more likely to follow NICE guidelines... whether they have changed or not, I don't know, but, I imagine that the idea of once diagnosed, do not continue to test or spend time with these patients except to encourage them to go to a programme of CBT and GET. I'm sorry to be so dubious, but this is what I have experienced. No matter how improbable or lacking in common sense it is, the doctors I have seen have told me that what I am concerned about is not an issue, because 'all your blood tests are normal' They always omit the part about inflammation showing up on my blood tests, and aside from that, blood tests are like the magic window that can tell all. No further need for testing.

  • The NICE guidelines were placed on the static list after the February 2014 review as there was agreement from NICE (Professor Baker) that the guidelines were flawed but no agreement that sufficient evidence was available for changing them. PACE has had a massive influence on decisions followed, despite been generally discredited amongst academics.

  • I do understand and it's so very frustrating!

    You are asking important questions.

    The doctor conducting the survey of other doctors-- that was done 12 years ago, long before the IOM had anything to say or to offer. There are a few doctors willing to step out. The trick is to find them and ally with them in these types of efforts. :)

  • I read somewhere that there is actually a kind of bullying and stigma toward doctors who treat ME as a real medical illness by other doctors in the NHS. If this is true then we are up against not only an individual doctor's ignorance or prejudice and assumptions about us, but their fear of falling out with their peers, particularly in a group GP practice. With this as the backdrop, how do we as patients seek a safe place to even present our concerns to a GP. We have so little energy. It seems we are just travelling blind when it comes to finding a doctor who is willing to take time either to treat us, or more probably, to educate themselves and then take more time over the long term to treat us, keep working on various areas of concern and adjusting medications, combinations of meds, looking at other therapies, and all the rest. This would take a very special kind of person.

    Are there ideas as to how we as patients can possibly get one or find one, when gp surgeries have 'catchment areas' and are able to accept or reject new patient applications, and when doctors who are helping people or would be willing to do so aren't exactly looking for us by making that a matter of public information?

  • The ME Assoc. purple booklet is sent out to doctors. I have a copy. It lists in detail all the tests and assessments that they should do in order to determine whether our symptoms are caused by ME or by something else, or by ME with comorbid other illness problems. I have never had a doctor who did half of those things on that list. I have asked them to and they have told me there is no need, or just referred me to a consultant who did not treat my illness either. To get doctors to do these things, wouldn't their practice and local trust have to be favourable to paying for it on behalf of a patient with multiple symptoms?

  • All very important questions. :)

  • The doctors taught in the old school have positions of power within the medical profession, even Dr Charles Shepherd did not believe it was real until it affected him personally as the video shows

    We are waiting for the young doctors that read the research not the old fossils in their entrenched positions for a better future than we have had in the past.

  • I understand the idea that some doctors feel they may be up against bullying and stigma if/when they take an interest in people living with CFS/ME.

    A person/doctor of substance will not allow this nonsense to alter his/her own convictions.

    I remember when I was under the care of Dr. Komaroff and I was sent to other departments of the same hospital for tests. He was not only a researcher, but was also in a practice of Internal Medicine with other physicians. Many other specialists did not understand then and made some comments. This did not alter the course of Dr. Komaroff's research and/or advocacy. He never lost the respect of the many. He's still standing and his reputation is flying with high colors at Harvard University and elsewhere. :) He is very highly respected.

    My current physician and advocate also works in Internal Medicine and does not care if other doctors laugh or make fun of him and/or the conditions he treats. He chalks any such behavior up to their ignorance and offers to help them to understand the literature and the needs of the people suffering.

    Some doctors are here to serve their patients and to serve Truth. They do not respond to these questionable tactics utilized by questionable doctors. More often than not, the doctors engaged in these types of nonsensical behaviors don't survive with their reputations intact. The doctors operating under their own convictions, and with integrity, move forward with confidence. Thankfully. :)

    Now, to identify those types of physicians is an important task. :)

    They often self-identify by contributing to a medical newsletter, taking up research, etc.

    Most physicians will not give in to bullying, etc. Some will change their way of thinking once they are educated. I have seen this over and over again. :)

    In support,


  • I sure do hope you are correct, but I think it may be worse within our NHS where they are so pressed to deny tests to patients and to do as little 'hands on' examination as they can so to rush through more patients in a day. At least that is my understanding of it.

  • Hi Budgiefriend, I agree with you. These are all very important questions. I truly admire your ability to formulate these questions. :)

    I am just throwing out ideas, sharing what I have seen work well, etc. :)

    Your questions are important and answers to them are also important. I am not assuming I have answers, I am simply sharing. :)

    In the U.S., this idea of pushing through as many patients as possible falls under "managed care" and a few other names.

    We had asked the local health conglomerate agency about their perspective on this:

    Is it better to create a CFS/ME clinic or better to try to cover the needs of CFS/ME clients through the "Primary Care" practices?

    They understand any client with chronic illness will take longer to see within the busy "Primary care" practices. They have asked their Primary Care physicians to schedule patients with more needs either late morning or just before the end of the day. The idea is the physician can stay and work longer with the patient at these times, without throwing the whole practice schedule off for the day.

    They also have devised a system where patients can schedule for 10 minute, 15 minute, 20 minute and 30 minute appointments. They add on to the 30 minute appointments as needed. They "pretend" nothing runs beyond 30 minutes, yet sometimes it does, of course. ;)

    These options for seeing chronically ill patients needing longer appointments have come about by a combination of: doctors voicing the need, advocacy groups voicing the need (to policymakers at the hospitals/clinics) and by some politicians also advocating for adequate care within the managed care type of setting.

    Shedding light upon the issue often helps to bring it proper attention and also often helps in reaching some kind of a negotiation on resolution. :)

    There were ways we could help, too. We had devised a format for patients to utilize, information the patient had filled out ahead of time and had ready for the appointments. This had included (yet was not limited to) current medications, recent history, new concerns, follow-up on older concerns, consults completed, specialist consults needed and other questions, etc. This helped to keep the appointment focused and organized. We found this approach very helpful to patients and to doctors alike. Much more was attended to properly and in less time, using this type of format. (This was so helpful, the large health conglomerate had later also tested using this same format for all patients going through their system.)

    I had found it very, very helpful to approach doctors and representatives of medical systems with a very positive "we can do this together" type of an attitude. I am sure I looked oblivious to any resistance, as I never empowered it to take me "off task." I just kept smiling and kept negotiating and kept moving the ball forward. :)

    I held the expectation that people were going to see the value in the proposals and were going to become advocates for the proposals. That did come about quite often.

    I held a vision for what I wanted to see happen and kept moving toward those goals.

    I wanted to build bridges for the future of CFS/ME care. I kept my eye upon that goal.

    (Admittedly, this was difficult as I was as fatigued and as frustrated as anyone else. I also had friends with CFS/ME die. I knew there was a terrible mess and little to no justice. I was very aware of the many shortcomings; yet, I also knew that I had to look to the future in order to get anywhere, in order to get people onboard with new proposals of any kind. I think I was very positively affected by Dr. Komaroff's positive and tenacious attitude. :) The positive energy helped to attract people to the cause. )

    I hope something I am sharing helps in some way as we all look to the near future of CFS/ME/SEID/Ramsay's Disease care.

    Ian had written above "...our future is not in looking backwards, it's looking forwards into the future empowering with information as the tide is turning."

    I agree and this has always been the case, in my experience.

    Budgiefriend, I do not know if there are any answers in what I have written for the NHS system. People like you, people working within the NHS system, know that system much better than do I. :)

    I am hopeful we can find new and much more helpful solutions. :)


  • Poll created in an attempt at addressing the issues raised. Feedback will enable an increasingly accurate reflection of members wishes in shaping future polls.

  • Did you already organise a poll? If so where do we find it?

  • Great feedback already focused on the questions overlooks putting a link taking members onto the where they find them.

  • never mind, Bag End. I found the email directing me to the poll and have left you my comments. Thank you.

  • Thanks so much for all your detailed information.It is encouraging to know that there are some extremely unselfish people working hard to change things.

    A person with ME needs support and advocacy most of all in trying to access the right health care, and I think we even need people to speak on our behalf. If we are being seen (as we are in this country) as benefits cheats, scroungers, whiners, or mental cases, then our efforts to stand up for ourselves and try to push for what we need are often just riling people in the health care profession, rather than getting their help to work out the problems that keep us in this loop of sickness and pain.

    I think it would go a long, long way toward making change if the charities could have people trained to speak on behalf of the patient, presenting their needs and rights to the appropriate bodies or professionals, filling out complaint forms, and doing the networking, leg work, etc. to find a suitable physician for them within the health service. Maybe even a trained advocate could not do this, but they would have a better chance than someone with cognitive problems and pain such that they can't even remember to take their medications when alarms go off.

    There are quite a lot of people who have been mostly abandoned by family, friends, and community, and they are just barely able to halfway deal with their most basic personal care, or maybe have some few hours of care provided but not much beyond that.

    When I was a bit younger, I did not fit into the eligible group for the local charitys and social services, because they were aimed at more severely disabled or elderly people. It was a miserable feeling to be told that they would try to find a volunteer and then they never did, because no agency or charity could fit me into their eligibility guidelines.

    Perhaps now that there is strong enough guidance from the ME Association and some other groups, we have a better opportunity for advocacy with doctors and Social Services. I had an OT visit me recently who was not only unhelpful, but made insulting remarks. I am not sure what the procedure would be to have a different OT who might understand my need for certain things or offer ways to work around my serious problems with self-care.

    Is there anything we can try to encourage whereby people would have more advocates who could come to them if they are housebound, and take on some of these challenges. My Social Services Care Manager seems so overloaded that I don't think she can do it.

  • It would be great if we could be guaranteed a stable and regular appointment at pain clinic so that treatment of Fibro/ME is not haphazard or piecemeal which it totally counter- productive for effective management of both conditions. I was supposed to be seen for my review appointment in October 2014. 6 months later, I have no idea when I will be seen. I know the NHS is under pressure, but pain management is vital to prevent a deterioration in both physical and mental health. Has anyone else experienced the same problem? ( I live in N. Ireland

  • Like you, Kerryjess, I often get exasperated at the shortsighted attitude around NHS spending. So many people are unneccessarily burdened with ongoing worsening conditions and agony because treatments are only available for a short time, or intermittent, or after a lengthy wait and a lot of red tape. Meantime, we get complaints about costing the taxpayers money in benefits, or about the NHS being overloaded.

    it makes more sense to do a thing in a timely manner and in the proper manner so that down the road you don't find the problems exacerbated and other conditions piling on top of the ones people had already, which now require more NHS money and time from doctors. I don't think politicians and managers have a good overview or reasoning skills around these issues. They seem to just throw money hither and yon, or withhold it hither and yon with no rhyme or reason.

    And more often than not, people just have to put up with it because it's free, and they are too ill or too stressed or whatever to band together and demand change in a meaningful way. :(

    I had some difficulty getting regular pain management appointments at my local pain clinic, where I was offered no guidance except medication and/or 6 accupuncture 'Western' style treatments spaced 2 weeks apart and only one a week. Even with that plan, there ended up being gaps of a month or more between the sessions. Accupuncture is a cumulative thing, I believe, so this was not at all productive.

    That type of acupuncture treatment provision is not useful to someone with an ongoing chronic serious pain condition. In my mind it is a waste of NHS money.

    Sometimes I was not able to get a monthly or 6 weekly appointment, but usually if I said I might be available in case of a cancellation, one would come up with a few hours notice during which to organize a bath and taxi there. I also had to cancel two or three as I was too ill to get myself there, even in a taxi.

    I was put on pregabalin and monitored regularly over the course of about a year. I felt the consultant who monitored the pain medication was good and helpful, but he only dealt with the medication and my reports of how it was affecting me. I got Pregabalin and was gradually put on higher doses when discovered that I had no significant side effects and it helped me sleep. after a year or so, that was all that could be offered by this consultant except to refer me to his colleague who does acupuncture at the hospital.

    While the acupuncture consultant was skilled, he did a western form of it, using small needles and only a few placed at a session, which he would sometimes hook up to a very low level electrical current. I found no benefit from this, and was disappointed as the treatments were not often enough or enough of them to do any good at all.

    (I had previously been helped a lot by a private and exceptionally skilled Chinese doctor who did Chinese style accupuncture with many needles in multiple locations at a time... small, but always stimulated in the traditional way. I really had good results with that twice a week for several months early in my illness. Sadly I had not been able to keep up with the cost, as my financial circumstances had changed with a divorce.

    I have seen other people say that their pain clinic offered a lot more options for pain management, so I know this depends on where you go and which consultants and therapists are available to you in your area.

    This kind of piecemeal availability of therapies and treatments seems unlikely to get better, as more and more of the NHS is being divided up and sold off to private for profit companies.

  • Budgie friend thanks for the reply. It's so frustrating that we are dependent on our postcode as far as care is concerned. I have found acupuncture helpful but like you, any I got on NHS wasn't as effective as privately done. My physio treats my joint pains but the last time I went, thinking my upper back was showing signs of disc deterioration, he said it was a flare up of my fibro and he gave me acupuncture for that, which has made a big difference in the past week. He used lots of needles across my shoulders, down my arms and in both hands. Why can NHS not do this? Take care.

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